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FOOD STANDARDS AUSTRALIA NEW ZEALAND March 2004

© Food Standards Australia New Zealand 2004 ISBN 0 642 34503 1 ISSN 1448-4501 Published March 2004 This work is copyright. Apart from any use as permitted under the Copyright Act 1968, no part may be reproduced by any process without prior written permission from Food Standards Australia New Zealand Food (FSANZ). Requests and inquiries concerning reproduction and rights should be addressed to the Information Officer, Food Standards Australia New Zealand, PO Box 7168, Canberra BC, ACT 2610. An electronic version of this work is available on the Food Standards Australia New Zealand (FSANZ) website at http://www.foodstandards.gov.au . This electronic version may be downloaded, displayed, printed and reproduced in unaltered form only for your personal, non-commercial use or use within your organisation. Food Standards Australia New Zealand Australia New Zealand PO Box 7186 PO Box 10599 Canberra BC ACT 2610 Wellington Australia New Zealand Tel +61 2 6271 2241 Tel +64 4 473 9942 Fax +61 2 6271 2278 Fax +64 4 473 9855 Email [email protected] Email [email protected]

FOOD LABELLING ISSUES

Quantitative Consumer Survey on Allergen Labelling: Benchmark Survey 2003

EVALUATION REPORT SERIES NO. 7

QUANTITATIVE CONSUMER SURVEY ON ALLERGEN LABELLING: BENCHMARK 2003

FINAL REPORT

Prepared by

Marketing and Communications Research Consultants

Preferred citation: Food Standards Australia New Zealand. 2004, Quantitative

Consumer Survey on Allergen Labelling: Benchmark 2003 - NFO Donovan Research Report, FSANZ, Canberra.

Job No.: C02039 Rhonda Zappelli B.App.Sci., B.A., QPMR Date: February 2004

QUANTITATIVE CONSUMER SURVEY ON ALLERGEN LABELLING: BENCHMARK 2003 C02039 – REPORT OF RESULTS NFO DONOVAN RESEARCH

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TABLE OF CONTENTS EXECUTIVE SUMMARY.................................................................................................1

1 BACKGROUND......................................................................................................8 1.1. Introduction .................................................................................................................8

1.1.1. The new food regulations................................................................................8 1.1.2. Food Allergies .................................................................................................9

1.2. Research objectives .................................................................................................10 1.3. Target groups ...........................................................................................................11

2 METHODOLOGY..................................................................................................13 2.1. Modifications to the methodology .............................................................................13 2.2. Questionnaire Design ...............................................................................................14 2.3. Pilot...........................................................................................................................15 2.4. The survey sample ...................................................................................................16 2.5. Response rates.........................................................................................................18 2.6. Distribution procedure controls .................................................................................20 2.7. Data coding...............................................................................................................20 2.8. Data processing........................................................................................................21 2.9. Data analysis ............................................................................................................21 2.10. Confidentiality ...........................................................................................................22 2.11. Reporting ..................................................................................................................22

3 WHO THE SURVEY COVERS .............................................................................24 3.1. Where questionnaires were returned from ...............................................................24 3.2. About the respondent ...............................................................................................26 3.3. About the household.................................................................................................30 3.4. About the allergies ....................................................................................................33

4 IDENTIFICATION AND DIAGNOSIS OF THE MOST SERIOUS ALLERGY .......38 4.1. How the allergy was first identified (Q9) ...................................................................38 4.2. Length of time since the food allergy was first identified for the person with the

most serious allergy (Q10)........................................................................................40 4.3. Who diagnosed the most serious food allergy (Q11a/b)...........................................41 4.4. How the most serious food allergy was formally diagnosed (Q11c) .........................43

5 KNOWLEDGE AND INFORMATION ABOUT THE ALLERGY............................44 5.1. Respondents’ ability to identify food ingredients of concern (Q14)...........................44 5.2. Sources of information (Q18)....................................................................................51 5.3. Ease with which information about what ingredients to avoid was originally

found (Q19)...............................................................................................................52 5.4. Type and source of instruction on how to identify ingredients of concern on

food labels (Q20) ......................................................................................................55 5.5. Membership of a support group (Q21)......................................................................56


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6 MANAGING THE ALLERGY................................................................................59 6.1. Severe allergic reactions since allergy was first identified (Q13a)............................59 6.2. Approach to eating foods containing substances of concern (Q15) .........................62 6.3. Ways in which food allergies are managed (Q16) ....................................................63 6.4. Approach to broad product categories in screening for substances of concern

(Q17).........................................................................................................................71

7 THE USE OF FOOD LABELS TO MANAGE THE ALLERGY.............................73 7.1. General use of food labels (Q22)..............................................................................73 7.2. How often food labels are used in the selection of packaged foods (Q23)...............76 7.3. How trustworthy labels are perceived to be (Q24)....................................................78 7.4. How often unsure about food label information (Q25) ..............................................80 7.5. Action taken when unsure of an ingredient or a product label (Q26)........................81 7.6. Attitudes towards and utility of disclaimers (Q27, Q28, Q29) ...................................82 7.7. Overall ability to recognise substances of concern (Q14, Q30)................................84 7.8. Ability to recognise substances of concern on actual food labels (Q30) ..................87

8 OTHER LABELLING ISSUES..............................................................................99 8.1. Labelling issues of concern (Q31) ............................................................................99

8.1.1. Spontaneous (Q31).......................................................................................99 8.1.2. Prompted (Q32) ..........................................................................................101

8.2. Any changes observed to the way allergens are listed on food labels (Q33) .........102 8.3. Suggested improvements to food labels (Q34) ......................................................104

9 LIMITATIONS .....................................................................................................107

10 CONCLUSIONS AND RECOMMENDATIONS...................................................110 10.1. Level of awareness and knowledge of consumers about labelling provisions

that cover allergens ................................................................................................110 10.2. Ability to successfully identify manufactured foods that contain allergens .............111 10.3. Existing behaviours of main grocery buyers in regard to food selection.................111 10.4. The labelling of foods and its impact on the occurrence of adverse / allergic

reaction ...................................................................................................................112 10.5. Clarity and understanding.......................................................................................113 10.6. Recommendations..................................................................................................115

11 REFERENCES AND BACKGROUND INFORMATION......................................116

APPENDIX A: METHODOLOGY REPORT APPENDIX B: 1. NEW ZEALAND QUESTIONNAIRE 2. NEW ZEALAND INFORMATION LETTER 3. NEW ZEALAND CONSENT FORM


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APPENDIX C: 1. AUSTRALIAN QUESTIONNAIRE 2. AUSTRALIAN INFORMATION LETTER 3. AUSTRALIAN CONSENT FORM APPENDIX D: RECRUITMENT CRITERIA Since this report was written, the research company NFO Donovan Research has been acquired by TNS, with the result that the company is now officially known as TNS Social Research.


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EXECUTIVE SUMMARY The Quantitative Consumer Survey on Allergen Labelling provides baseline data on consumers’: • levels of awareness and knowledge of the allergen labelling provisions for manufactured

foods; • ability to successfully identify foods containing pertinent allergens; and • behaviours towards food selection for those ‘at risk’ of adverse reactions to food. The survey was designed to assess the understanding and use of food label information in food selection decisions made by the main grocery buyer in a household when shopping for foods for consumption by those who are ‘at risk’ of adverse or allergic reactions to food. A targeted sample was obtained that was not intended to be necessarily representative of gender, age, education, or ethnicity of the general populations of Australia and New Zealand, or of the ‘at risk’ population themselves. For example, the higher population of female respondents reflects the current predominance of women as household managers and carers (SNZ 20011; ABS 1995). The data obtained from this survey will be used by Food Standards Australia New Zealand (FSANZ) to assess how well the new allergen labelling standard is working in the two countries. This benchmark survey will also assist FSANZ through a future evaluation, to track whether allergen labelling requirements meet the stated objective of providing adequate information relating to food to enable consumers to make an informed decision. Background The Australia New Zealand Food Standards Code (‘the Code’) became fully enforceable from December 2002 after a two year transition period. It included new labelling requirements for manufactured foods sold in Australia and New Zealand. One of the requirements was that food labels are required to provide advice for consumers on the presence of certain substances in food. This can be in the form of mandatory warning statements; mandatory advisory statements; or mandatory declarations. These requirements apply when any of the substances listed in Standard 1.2.3 Mandatory Warning and Advisory Statements and Declarations are present in food as an ingredient, an ingredient of a compound ingredient, a food additive or component of a food additive, or a processing aid or a component of a processing aid (FSANZ 20021). The mandatory declarations, warning statements and advisory statements are intended to provide consumers with sufficient information such that they could prevent adverse/allergic reactions to a food or an ingredient in food.


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Another requirement was that the source of cereals and starch (e.g. wheat, rye, barley, oats) be declared on a food label, as is the source of vegetable oils if derived from peanut, soybean or sesame (Standard 1.2.4 Labelling of Ingredients). The food labelling standards contained in the Code cover both locally produced and foods imported into Australia and New Zealand. The survey The survey focussed on a selection of substances listed in Standard 1.2.3 Mandatory Warning and Advisory Statements and Declarations. These were wheat (gluten containing cereals and their products); eggs and egg products; fish and fish products; milk and milk products; nuts and sesame seeds (including their products); peanuts and soybeans (including their products) and added sulphites (in concentrations of 10mg/kg or more) (FSANZ 20021). In this survey, a broad definition of food allergy was adopted by FSANZ to target households with members who were ‘at risk’ of adverse reactions to foods, thereby obtaining a wider cross-section of respondents who may be assessing food labels critically because of concerns about the presence of allergens. ‘Food allergy’ in this survey meant ‘a reaction due to exposure to a food or ingredient in food resulting in at least one of the following symptoms: difficulty in breathing or throat swelling; swelling or itching of lips or tongue; hives, skin rashes or eczema; stomach cramps, vomiting or diarrhoea; or faintness or collapse’. While this includes anaphylactic reactions to food, it is a wider definition. It should be noted that this survey was not intended to measure the prevalence of food allergies in Australia or New Zealand, or to assess the consistency of food labels with allergen labelling requirements of the Code. At the time of this survey (immediately after the end of the transition period), foods were still legally available for sale that had been manufactured and labelled according to the old food standards. Methodology About 1% of adults and less than 10% of children in the population have been estimated to be ‘at risk’ of allergic reactions to foods (Cohen 1999; Swain, Soutter & Lobley 1996). To effectively reach this target group in the population, recruitment was undertaken via three routes: immunology/allergy clinics in hospitals and medical institutions; private immunology/allergy clinics and allergy support groups, in both Australia and New Zealand. This methodology was adopted because it was considered unlikely that sufficient participants would have been recruited using random sampling of the general population due to the low proportion of consumers ‘at risk’ in the population.


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Recruitment criteria were developed for use by medical specialists to ensure that both children and adults with different types of food allergies were contacted from all states, territories and regions with access to medical specialists. The three recruitment groups were controlled to ensure similar sampling proportions. When any difficulties were faced recruiting from a selected site, recruitment quotas were redistributed to other sites in the same recruitment group. The benchmark survey was conducted using a mail-out self-completion questionnaire. It was sent to consumers who were identified by medical specialists as being ‘at risk’ of adverse/allergic reaction to certain foods or ingredients in foods or who were members of an allergy support group. The questionnaire included open and closed-ended questions to be answered primarily by the main grocery buyer in a household where there was a member 'at risk' of an adverse reaction to certain substances. Those 'at risk' who were under the age of 18 years could choose to complete the questionnaire provided that they obtained their parents’ / guardians’ consent, however none chose this option. For clarity, throughout this report participants are referred to as 'respondents' whether they were the ‘main grocery buyer’ or the person with the allergy. In total, 1166 questionnaires were distributed via the three routes and 510 completed questionnaires were returned; 413 from Australia and 97 from New Zealand. The response rate for New Zealand was 40% and for Australia was 45%, with the overall response rate for the survey being 44%. Results 1. Key findings Four key issues emerged from this survey: respondents used food labels extensively in managing the allergies in their household.

They also reported noticing changes in the way allergens were listed on food labels; the ability of respondents to identify food products that contained the allergen of concern

varied considerably depending on the food allergy within the household and the terms used on the labels to declare the allergen;

respondents had adopted strategies to manage their food selection when buying for ‘at risk’ consumers. For example, checking all product categories to avoid substances of concern, reading food labels carefully, buying the same brand that past experience has shown to be allergen free, and checking food lists provided by allergy support groups; and

the labelling of foods was perceived to play a role, although not a major one, in the occurrence of a repeat allergic reaction since the allergy was first diagnosed, for example, as a result of an unlabelled or incorrectly labelled product (14% reported occurrences).


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2. Summary of results Awareness and knowledge about the allergen labelling requirements for manufactured foods Ninety percent of the respondents always read food labels carefully, and around two thirds (67%) of respondents had already noticed some specific labelling changes. These changes included: greater use of 'may contain' statements; the use of bold print for allergens named in the ingredient list; more warnings about nuts; the use of 'made on same product line or equipment' statement; the use of blanket statements such as 'contains dairy / seeds / nuts …'; and greater use of 'made in same factory' or 'same premises' statements.

Significantly more Australians than New Zealanders had noticed specific changes, such as statements about nuts, products made on the same production equipment as nuts, and blanket statements of ‘contains dairy/nuts/eggs’ etc, whereas significantly more New Zealanders than Australians had noticed the use of bold print for allergens listed in ingredient lists. Most respondents felt they could trust the information given on food labels. Respondents who were members of an allergy support group were significantly more likely than non-members to say they were not sure whether to trust labels. However, allergy support group members may be more critical of labelling information as they used this information more often. They were also significantly more likely to find some information, e.g. statement ‘may contain traces of…’, on food labels really useful or important, compared to non-members. Respondents showed a clear preference for the disclaimer 'made on the same equipment as products containing …' compared to either 'may contain traces of …', and 'made in the same premises as products containing …'. However, over a third of the respondents said that the 'made on the same equipment ...' statement was not very useful. Ability to successfully identify manufactured foods that contain allergens The levels of awareness or ability to identify foods that contained allergens varied considerably. It depended to a large degree on the type of food allergy the respondent had to deal with, and the terms used to declare the substances of concern on the food labels. Those with tree nut, milk or egg allergies were most accurate in their assessment of ingredients whilst those with peanut and wheat allergies were less accurate. Respondents indicated that the labelling issues that affected their ability to identify suitable foods to prevent allergic reactions were: lack of understanding on their part of some problematic ingredients. This was due to the

complexity or lack of clarity of terms used on labels (e.g. substances like 'emulsifiers'); the use of ‘may contain’ statements, which were perceived as being over-used or not clear,

and had the effect of restricting the choice of foods that were available;


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the derivation of some ingredients in foods, e.g. the source of certain vegetable oils, was often not stated;

issues that were the manufacturers’ responsibilities, such as unlabelled ingredients or changes to the ingredients in products without notice; and

food labelling information, such as the location of the information on the labels or the belief that there was a difference in labelling requirements for imported foods.

Additionally, the data indicated that respondents who were members of an allergy support group were more proficient at identifying many of the substances of concern compared to non-members. Existing behaviours of respondents in regard to food selection Respondents reported on strategies to manage their food selection when buying for those ‘at risk’ of an adverse reaction. For example, 41% reported checking all product categories, e.g. sweet biscuits or pre-prepared meals, to avoid substances of concern. This was reported most by respondents with sesame, soy or milk allergies in their household, and least by those with shellfish, peanut, tree nut or sulphite allergies. Respondents shopping for children were also more likely to report this than those shopping for themselves. Other strategies adopted included always reading food labels carefully (90%), always buying the same brand that past experience has shown to be allergen free (62%), never buying loose or bulk foods (43%), often buying food in sealed packages (44%), and often checking food lists provided by an allergy support group (24%). The labelling of foods and the impact on the occurrence of adverse / allergic reaction Forty-two percent of respondents reported that the person with the most serious food allergy within their household had had an adverse reaction after the diagnosis had first been made. The causes reported for this repeat reaction had been accidental consumption (36%), contact with the substance of concern (21%), unlabelled / incorrectly labelled food (14%) and traces of substances in unexpected foods (6%). Members of allergy support groups were significantly more likely (10%) than non-members (1%) to report that the reaction was caused by unexpected traces of substance in the product. Most respondents with peanut, tree nut, shellfish or fish allergies said they never eat the substance knowingly. In contrast, those with sulphite, soy or wheat allergies said they try but cannot avoid the substance completely.


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Conclusions and recommendations Clarity and understanding of allergen labelling were the two key aspects that were said to impact on the effectiveness of labels, by consumers shopping for foods for those ‘at risk’ of adverse or allergic reactions. According to respondents, the clarity of labelling information could be enhanced by: adopting more meaningful or accurate labelling or ‘advisory' statements; ensuring that the origin or derivations of particular ingredients are stated; using uniform wording in plain English for allergens; using percentage labelling for allergens to indicate how much of the substance of concern

is in the food to enable an assessment of risk; and further considering formatting issues, such as print size and standard placement fields on

labels. The second factor, understanding of allergen labelling, was clearly an issue for respondents. While ‘understanding’ is a difficult concept to measure, in this survey it was assessed by the respondents’ ability to use food labels to select appropriate foods, including their ability to identify different names for the substance of concern to them. The results of this survey indicated that understanding the information on food labels played a role in consumers’ ability to use food labels appropriately when selecting foods for those ‘at risk’ of adverse or allergic reactions. This survey has found that the membership of an allergy support group assisted greatly in the respondents’ ability to identify the foods that were not suitable, and consequently to avoid foods that might otherwise trigger an allergic reaction. For example, members of a support group were more likely to contact the food manufacturer or the support group for advice on certain foods. Clarity and understanding of food labelling information is not an issue confined to consumers shopping for the sub-population ‘at risk’ of food allergic reactions. The two key issues identified in this survey, clarity and understanding, are similar to the findings of ‘Quantitative research with consumers on food labelling issues’, a survey undertaken with the general population. That survey also indicated that consumers in Australia and New Zealand had difficulties using labelling information effectively to make informed food choices (FSANZ 2003). This baseline survey measured the current situation with regard to the use of food labels amongst the target group of those purchasing food for a household in which there is someone 'at risk' of an adverse or allergic reaction to food. It could be argued that this particular target group is impacted most by changes to food labels. Therefore, it is important to track their progress as the changes to food labels are implemented more widely, and that their needs are considered in any further label changes.


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It is recommended that as part of future evaluation activity a replicate survey be conducted in two to three years time, using the same methodology. Such a survey would enable FSANZ to track whether the allergen labelling provisions of the Code are meeting the desired objective of providing adequate information in relation to food, to enable consumers to make informed choices. If a survey is not possible, an alternative approach should be considered.


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1 BACKGROUND

1.1. Introduction 1.1.1. The new food regulations The Australia New Zealand Food Standards Code (‘the Code’) that became fully enforceable from December 2002 included several changes to the labelling provisions for Australia and New Zealand. Food labels are now required to provide three levels of advice for consumers; mandatory warning statements; mandatory advisory statements; and mandatory declarations of certain substances in foods. These provisions apply when any of the substances listed in Standard 1.2.3 Mandatory Warning and Advisory Statements and Declarations are present in food as an ingredient; an ingredient of a compound ingredient; a food additive or component of a food additive; or a processing aid or a component of a processing aid (FSANZ 20021). The mandatory declarations, warning statements and advisory statements are intended to provide consumers with sufficient information such that they and / or their carers can avoid potentially life-threatening adverse reactions to food or an ingredient in food. Allergens that must be declared on food labels include gluten containing cereals and their products (e.g. wheat, rye, barley, oats); crustacea and crustacea products; eggs and egg products; fish and fish products; milk and milk products; nuts and sesame seeds (including their products); peanuts and soybeans (including their products) and added sulphites (in concentrations of 10 mg/kg or more) (FSANZ 20021). This means that the Code now requires the declaration of specific substances in a food product. For example, wheat, rye, barley, oats, spelt etc have to be declared on the food label instead of cereals; peanuts, soybean or sesame instead of vegetable oil and specific name of crustacea used instead of using the generic label of fish or crustacea. Furthermore, where starch is derived from wheat, rye, barley, oats or spelt, the specific source of the cereal must be declared Previously, not all foods were labelled for the presence of food ingredients that may affect people with allergies or food intolerances. The intent of the Code is to ensure all of the main foods that may cause allergic reactions (as indicated above) will be declared on the label of packaged foods. Under the old Code only peanuts in packaged foods were required to be labelled, and added sulphites if present in concentrations greater then 25 mg/kg.


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Sulphites, a group of related food additives, were included in the Quantitative Consumer Survey on Allergen Labelling because in a small number of people it causes symptoms that are identical to that of allergy (Jackson 2003). It must be noted that while sulphites may not be considered an allergen, in this survey it has been reported together with the other allergens, such as eggs and peanuts. Food Standards Australia New Zealand (FSANZ), through its established Evaluation Strategy 2001-03, will assess through this survey, how well the regulatory arrangements of the Code are working in terms of the allergen labelling requirements (ANZFA 2001). The Quantitative Consumer Survey on Allergen Labelling was conducted in Australia and New Zealand to collect baseline data on knowledge and awareness of the allergen labelling provisions by those ‘at risk’ of allergic reactions to foods, and their current behaviours in food selection. It is intended that a follow-up survey would be conducted at a later time to assess the effects of the introduction, in the Code, of the labelling changes for allergens. 1.1.2. Food Allergies A food allergy may be defined as an adverse reaction to food proteins due to an immune hypersensitivity, that is, an interaction between at least one food protein with one or more immune responses (Hill, Hoskings & Heine 1999). For sensitive individuals, the presence of allergens in food is potentially life threatening. Currently, there is no cure for food allergy, and the only successful method to manage food allergy is avoidance of foods containing the allergen. Fortunately, most consumers are aware of their specific sensitivities and can avoid foods that might result in a life-threatening situation. For example, while a person with a peanut allergy may find it easy to avoid whole peanuts, formulated foods present a separate challenge. In such cases, the individual relies on accurate ingredient labelling (Cohen 1999). An adverse reaction to allergens in food products is a serious health issue that affects around 1% of adults and less than 10% of young children (Cohen 1999; Swain, Soutter, Loblay 1996). Evidence suggests that infants with allergies, such as egg or milk, may ‘grow out of it’ but some allergies, such as peanut, may persist into adult life (Jackson 2003; Al-Muhsen, Clarke & Kagan 2003). With respect to adverse reactions, a single food may cause different symptoms in different people or even in the same person at different times. The same symptoms may also be caused by different foods in the same person (Jackson 2003). Food allergy symptoms affect many parts of the body including the gastrointestinal tract (nausea, vomiting, abdominal cramps), the respiratory tract (sneezing, asthma), the skin (eczema, urticaria) or the cardiovascular system (hypotension, cardiac arrest) (Jackson 2003; Al-Muhsen, Clarke & Kagan 2003; FSANZ 20022).


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A broader definition of food allergies was adopted by FSANZ for the purposes of this survey. This was done to attain a wider cross-section of participants who may be assessing food labels critically because of concerns about the presence of allergens; it is not canvassing a truly anaphylactic population (see section 1.3)1. It should be noted that this survey was not intended to measure the prevalence of food allergies in Australia or New Zealand, or to assess the consistency of food labels with the allergen labelling requirements in the Code.

1.2. Research objectives The evaluation described herein is the first part of what is intended to be a two-part process to measure the impact of the new allergen labelling requirements. The research aims were to: 1. assess the level of awareness and knowledge of consumers ‘at risk’ of an

adverse reaction, and their carers (if relevant), of the labelling provisions that cover allergens;

2. assess the ability of those ‘at risk’, or their carers (if relevant) to successfully identify those foods that contain the pertinent allergens;

3. understand the existing behaviours of ‘at risk’ consumers or their carers (where relevant) in regard to food selection; and

4. identify whether a lack of understanding of the allergen labelling of foods contributes to the occurrence of adverse reaction in those affected, and if so to what degree (FSANZ 20022).

The definition of consumers 'at risk' was widened in the survey to include all those who have had or are 'at risk' of an adverse (allergic) reaction to food (see section 1.3). This first phase of the evaluation is described as the benchmark survey. The survey is therefore, referred to throughout as the Quantitative Consumer Survey on Allergen Labelling: Benchmark 2003. It is planned to conduct a second phase of research at some time in the future to track changes in awareness, knowledge and behaviours when compared to the measures that are established by the benchmark survey based on the aims listed above.

1 There is no universally accepted definition of food-induced anaphylactic reaction, but it is

generally considered to be a food-induced reaction that involves one or more of the following symptoms: difficulty breathing or throat swelling; generalised urticaria (hives) and/or faintness or collapse (Ewan 1993)


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This has an implication for the methodology selected in that it must be able to be replicated, a key requirement for ensuring reliability.

As many food manufacturers had been in the process of bringing their food labels into alignment with the Code since it was first introduced in December 2000, these baseline data do not provide a 'true' measure of the situation with regard to allergen labelling ‘before’ the implementation of changes to the Code.

1.3. Target groups A targeted sample was obtained that was not intended to be necessarily representative of gender, age, education, or ethnicity of the general populations of Australia and New Zealand, or the 'at risk' population themselves. It was considered unlikely that sufficient participants would have been recruited using random sampling of the general population due to the low proportion of consumers 'at risk' in the population. The target groups for the proposed survey were originally identified as: those ‘at risk’ of anaphylactic reaction to certain foods or food ingredients; and their carers.

Food-induced anaphylactic reaction was defined as a ‘reaction that involves one or more of the following symptoms: difficulty breathing or throat swelling, generalised urticaria (hives) and/or faintness or collapse (FSANZ 20022). Originally, participants to be included in the research were those who had already had an anaphylactic reaction, or had been identified as 'at risk' of food allergies by medical specialists. If the 'at risk' participant was under 14 years of age, then their carers would have been invited to participate. However, during the development of the questionnaire, the defined target group was broadened to the following definition:

By serious food allergy, we mean a reaction that involves one or more of the following symptoms due to exposure to a particular food or food ingredient:

difficulty breathing or throat swelling, swelling or itching of lips or tongue, hives, skin rashes or eczema, stomach cramps, vomiting or diarrhoea, or faintness or collapse.


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The questionnaire was designed to be answered by the main grocery buyer, as it was deemed that they would be the most knowledgeable and appropriate member in the household to answer questions about food labels and food selection decisions. For clarity, throughout this report participants are referred to as 'respondents' whether they were the ‘main grocery buyer’ or ‘the person with an allergy’.


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2 METHODOLOGY The questionnaire was sent to clients of the medical / hospital allergy clinics, private allergy clinics, and members of the allergy support groups by the recruiters who agreed to participate in this survey. The recipient of the questionnaire pack was requested to give the questionnaire to the main grocery buyer in their household to complete. An option was also provided for those under 18 years of age to complete the questionnaire provided consent was obtained either from their parents or guardians. A comprehensive description of the methodology is included as Appendix A of this report. This section includes information on modifications to the planned methodology, response rates and data management by the researchers.

2.1. Modifications to the methodology The methodology adopted for the survey design was largely based on that specified in the Methodology Report (Appendix A). However, there were some variations and these are noted below. For the Australian questionnaire, potential respondents were provided with the

national free call phone number should they require assistance in completing the questionnaire. They were also provided with the contact details for the FSANZ Project Officer for any further information on the survey, and for the Department of Health and Ageing Ethics Committee if they wished to make a complaint regarding the survey.

For the New Zealand questionnaire, potential respondents were provided with the national free call phone number should they require assistance in completing the questionnaire. They were provided with contact details for FSANZ in Wellington for any further information on the survey, the Health and Disability Advocate in North and South Islands, Auckland District Health Board Maori Health Support for assistance or complaints regarding the survey.

There was some difficulty in obtaining clinicians / hospitals in Western Australia. As a result, the only responses from Western Australia were derived from contacts within allergy support groups.


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Before the research team could engage clinicians/hospitals to take part, ethics committee approvals were required from each individual hospital, even though the Australian Government Department of Health and Ageing Ethics Committee initially granted approval for the survey. Some ethics committees requested changes to the survey design that would have impacted on the parameters for the survey for that site. This would have affected the consistency of the bi-national survey parameters. After explaining the reason why the researchers preferred not to change the parameters for individual sites, most ethics committees granted approval, however a few did not. These sites were, therefore, omitted from the survey.

As a substitute for the questionnaires that could not be distributed via hospitals when the time came, an additional distribution of questionnaires, over and above that originally planned, was sought from several support groups and some private clinicians (in both Australia and New Zealand). In New Zealand, attempts were made to include respondents from both North and South Islands and approval was obtained for both sites. But South Island was not officially represented, as the medical site could not identify food allergy clients from its records. An alternative centre where there was an immunology clinic was located, but no immunologist was available to select clients. It also proved not possible to identify any supplementary private practitioners from outside Auckland.

A less than anticipated number of private clinicians agreed to participate in the survey when invited and some were unable to participate due to time constraints. Thus, private clinician questionnaires were distributed by fewer practitioners than was initially planned.

A set of recruitment criteria were developed for use by medical specialists to ensure that both children and adults with different types of food allergies were contacted from all states, territories and regions with access to allergy/immunology clinics.

2.2. Questionnaire Design

The survey questionnaire was designed to be self-administered with both 'closed' and 'open-ended' questions. Primarily, NFO Donovan Research developed the survey questionnaire with the assistance of two specialist dietitian consultants. The draft questionnaire was reviewed by FSANZ and its Project Team for appropriateness prior to the pilot survey. The Project Team included members from allergy support groups, immunologists, food industry representatives, dietitians, nutritionists and other Australian and New Zealand government representatives.


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Two separate questionnaires were developed; one for Australia and the other for New Zealand (Appendices B and C). The questions in both questionnaires were the same except for two key differences: demographics section (section F) was tailored specifically for each country; and question 18 in the knowledge and information section had an additional option of

‘manufactured food database’ (MFD) in the New Zealand questionnaire. The questionnaire attempted to elicit responses on specific allergens rather than the categories as stated in Standard 1.2.3 (clause 4) of the Code. The allergens included in the questionnaire do not, therefore, correspond exactly with those listed in the standard, for example, only wheat was included in the questionnaire not the category ‘cereals containing gluten and their products’, peanut and soy were listed separately in the questionnaire, as were tree nuts and sesame. According to the Code (Standard 2.2.3 Fish and Fish Products) ‘fish’ is interpreted as any of the cold-blooded aquatic vertebrates and aquatic invertebrates including shellfish (FSANZ 20021). In the questionnaire, fish and shellfish were investigated separately.

2.3. Pilot The pre-test of the survey was conducted at the offices of NFO Donovan Research in Perth (Australia) amongst one focus group of seven potential respondents referred to in this section as participants. The participants were recruited by word of mouth networking amongst the friends of staff and snowballing to their friends. All potential participants were asked to volunteer themselves for inclusion if they were interested in taking part. Thus, all participants were aware of the voluntary nature of the research. Each participant was posted a package containing the materials that would be sent in the final mail out to 'at risk' consumers (i.e. questionnaire, information letter, and two copies of the consent form). They were requested to complete the questionnaire and then bring it along to the discussion. Participants were paid $40 for their time and input. Overall, there were no major issues identified with the questionnaire with most participants indicating that the questionnaire was comprehensive and easy to complete. Full details of the pilot survey can be found in Appendix A. There were a few minor changes made to the questionnaire and the results of the pilot survey have not been included in the results of this report.


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2.4. The survey sample For the survey proper, respondents were sourced from Australia and New Zealand in relative proportion of their respective populations. The New Zealand sample was boosted slightly in an effort to attain a total of 100 completed questionnaires. The questionnaires were distributed in both countries from 11th March 2003, the final cut-off for the receipt of questionnaires being 4th July 2003. The final date had been extended several times during the process to accommodate the delays that were encountered. The overall sample projections by country are shown in Table 2.4a together with the proportions achieved from each. Table 2.4a Sample achievement by country

ACTUAL POPULATION

PROPORTIONS

TOTAL REQUIRED1

(a)

TOTAL ACHIEVED

(b) % % % Australia 83 79 81 New Zealand 17 21 19 100 100 100

1 New Zealand sample 'boosted' to achieve 100 completed responses.


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The sample projections are shown for each state and territory of Australia and for island of New Zealand in Table 2.4b together with the number achieved from each. Table 2.4b Sample achievement, by state/ territory or island as proportions of

the country sample PROPORTIONS

REQUIRED (a)

PROPORTIONS ACHIEVED

(b) Australia % %

New South Wales 34 30 Victoria 25 22 Queensland 19 21 South Australia b8 11 Western Australia 10 a5 Tasmania 2 4 Northern Territory* 1 0 Australian Capital Territory b2 a6

TOTAL AUSTRALIA 101** 99** New Zealand

North Island b76 a95 South Island b24 a4

TOTAL NEW ZEALAND 100 99** * Northern Territory was excluded from survey due to inability to locate appropriate sample. ab Indicates categories where there is a significant difference between the results in each column

(significance at the 95% confidence level) ** Does not add to 100% due to rounding Due to difficulties in achieving full support from some organisations and individuals, the sample that was eventually attained varied from that planned. However, the overall division by country was similar to that required.


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2.5. Response rates Response rates for the different sample segments are shown in Table 2.5. Table 2.5 Response rates by sample segment

TOTAL Australia (a)

New Zealand (b)

BASE: ALL RESPONDENTS 513* 416* 97

Mailed out

Returned % Returned % Returned %

Source n n % n % n % Hospitals 471 180 38 157 42 23 23

Private clinicians 356 115 32 83 30 32 39

Extra private clinicians 87 42 48 42 48 NA NA

Support groups 172 118 69 83 63 35 88

Free call number** 80 58 73 51 86 7 33

OVERALL 1166 513 44 416 45 97 40 * 3 questionnaires were logged in but later removed due to incompleteness ** A Free call phone number was set up to facilitate calls to NFO Donovan Research from either Australia

or New Zealand. For this survey, a total of 1166 questionnaires were distributed in Australia and New Zealand and 5132 were returned, a response rate of 44% overall. Given the nature of the methodology, this is a relatively sound response rate3. A brief review of published Australian literature indicated that when enclosed self-administered questionnaires together with information letters were distributed to potential respondents, response rates ranged from 12 – 67% (Halliday et al 2003; Ivers et al 2003 & Serna et al 2003). As could be expected, the highest response rates were attained by those who called the Helpline (self-selectors) and those who were recruited via support groups. Hospitals and private clinicians attained quite similar responses with around a third returning their questionnaires. Around half of the extra questionnaires sent out by the clinicians (in response to the failure of several hospitals to do so) were returned.

2 3 questionnaires could not be processed due to incompleteness. 3 Higher response rates could be attained with additional measures, such as advance letters and

further reminders.


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In this survey, it was noted that individual response rates varied considerably between recruiters4, raising a further question about whether all the questionnaires were actually distributed5 by all recruiters. One recruiter who had initially agreed to participate did not distribute any questionnaires, although a number of phone calls were made to confirm participation. This brought the overall response rate down. The questionnaires for this particular recruiter were returned to the researchers unused in November 2003. The questionnaires for another hospital that declined to participate, and notified researchers of this, were able to be redistributed to hospitals in other states prior to the final closing date. Apart from the issues outlined above, the non-response rate could also have been affected by additional factors such as: the questionnaire distribution relied of the recruiters posting out the questionnaire

packs to potential respondents. Some packs may have been sent to addresses from where the potential respondent had moved and not informed the recruiter. However, the number of packs that were marked 'return to sender' was low suggesting that this had a very minimal effect overall;

questionnaires might have been sent to households where English was not spoken at home, and some potential respondents may not have completed the survey. Help with the questionnaire was offered to all participants through the NFO Donovan Research helpline numbers in both Australia and New Zealand, and more specifically to Maori speakers in New Zealand;

it was possible that some respondents received questionnaire packs from two sources; i.e. medical and support group. In this instance, respondents were requested to complete one questionnaire only;

it was possible that some recruiters may not have mailed out the reminder cards one week after the questionnaires were posted, as instructed; and

some questionnaires may have been received close to / or past the cut-off date indicated on the cover, thus leading potential respondents to believe that the completed questionnaire would no longer be accepted.

4 Amongst those who distributed questionnaires, response rates varied from between 31% and

75% for Australian hospitals and 24% and 38% for New Zealand hospitals; 2% and 60% for private Australian clinicians. There was only one private New Zealand clinician and the yield from this clinic was 39%.

5 Very few questionnaires were returned unopened.


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2.6. Distribution procedure controls As per the methodology report (Appendix A), approval had been sought and received from individual medical institutions prior to the mail-out of questionnaire packs. The dispatch of questionnaire packs was tightly controlled. Once the total number of recruiters was identified and their individual sample amount was allocated, each recruiter was assigned a series of numbered questionnaires for distribution and these ranges were recorded. This measure was undertaken to maintain some record of where questionnaires were returned from (to check on relative representativeness), and to provide the ability to calculate response rates for each of the sample recruitment points. Recruiters' packages were then couriered or Express posted to the street address provided by each. As completed questionnaires were received by NFO Donovan Research, individual questionnaire numbers were recorded to enable some limited cross-checking and to facilitate the calculation of response rates. This checking also enabled the identification of recruiters from whom no questionnaires were received, so that follow-up calls could be initiated. This numbering system identified the recruiter only. The personal or contact details for individual participants were masked for all but the support group sample, whose participants were recruited via the NFO Donovan Research helpline. The contact details recorded by the helpline staff were at no time linked to the results on returned questionnaires. All identification details for this small sub-group, were deleted as soon as the questionnaires were sent out to them. All except five returned questionnaires were input: two questionnaires were excluded because, through a printing or questionnaire assemblage problem, respondents had not been presented with a complete questionnaire; and three questionnaires were excluded because they had only been partially completed.

2.7. Data coding The coding of open-ended questions was undertaken by NFO Donovan Research, and some consultation occurred with the contracted nutritionists in the team to ensure the codes used and analysis were appropriate. All coding was checked by a senior coder.


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2.8. Data processing SurveyCraft was used to produce data tables with full significance testing6. Data tables were checked by the researcher and any errors or data anomalies detected were corrected. Market Research industry standard practice was employed for analysis of these research data. The analysis technique used was uni-variate only, i.e. cross-tabulations. No multi-variate analysis was undertaken. In the methodology report, it was suggested that weighting could be applied to adequately represent the two countries and the states / territories (Appendix A). Because of concern that there may be differences between respondents from the different sample sources (see 2.2.1) that weighting could distort, it was deemed to be inappropriate to weight in this instance due to the anomalous representation from the three sample sources in each location. The data presented in this report are therefore unweighted.

2.9. Data analysis The results of respondents' awareness of products or ingredients that contain substances of concern are reported only against the key substance of concern in that product (sections 5 and 7). This is because products or ingredients may have varied composition depending on the manufacturers’ specifications. For example, marzipan is reported against tree nut allergies only, although it could also contain eggs and wheat; 'surimi' is reported against fish but it could also contain eggs, starch and shellfish. Vegetable oil is reported against peanuts, but not included in the tree nut section. It should be noted that Standard 1.2.4 of the Code states that if the source of vegetable oils are potential allergens, then the source must be declared on the food label (FSANZ 20021); As part of the analysis a constructed measure was also developed. This measure calculated the number of items a person had identified in two questions (Q14 and Q30) as being an issue for their household. Each possible allergen was counted and an individual's score was compared to the total possible. This was done to give an indication of how well people identified the many substances of concern. Limitations with this are: there was a great deal of 'confounding' evident due to the number of households

with multiple allergies;

6 The test method used is a t-test on mean scores at a 0.95 confidence level. The overlap formula

was used.


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the substances that had been identified as being of concern generally, may not be of concern to an individual (e.g. vegetable oil could include peanut oil but this may only be a problem if it is unrefined); and

respondents may not know the meaning of some of the terms (e.g. they may avoid 'crab sticks' but not know that 'surimi' is the name for this substance).

These limitations should be kept in mind when considering the results reported in section 7.7.

2.10. Confidentiality

In accordance with the Privacy Act 1988 (Australia) and the Privacy Act 1993 (New Zealand), the survey methodology that was adopted was designed to ensure the privacy of all respondents. Therefore, the letter contained in the questionnaire pack to participants included statements to the effect that: their participation was voluntary; no personal details were passed on from the medical agency to the research

company (medical recruits only); any information collected for the survey would be used for research purposes

only; all responses would be anonymous; and there were clearly stated mechanisms for complaints.

The completed questionnaires were stored in a secure location within NFO Donovan Research (Perth) premises and destroyed as soon as the report had been finalised. All data are secured on the NFO Donovan Research computer network by restricted access to the relevant directories and password protection. Only individuals who were eligible to access the files i.e. those who administered the survey, coded responses, processed data or wrote reports, were granted access to these data. During the survey period, several respondents requested a copy of the published report and therefore, provided their names and addresses to FSANZ. These personal details were not linked to the survey data, and their details will be destroyed by FSANZ once the published results have been distributed to them.

2.11. Reporting The data are presented by sub-group where consistent differences are seen, usually by country, but also by other sub-groups, most commonly: the presence or absence of membership of a support group; the age of the person with the most serious allergy; and


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the total allergies in the household. Areas of significant difference are indicated on the tables using superscripted alphabetic column designations, e.g. significance was measured at the 95% confidence level. The results of this survey are presented under the following headings: 1. who the survey covers; 2. identification and diagnosis of the most serious allergy; 3. knowledge and information about the allergy; 4. managing the allergy; 5. the use of food labels to manage the allergy; and 6. other labelling issues. Following the results section, limitations of the survey are discussed and the key outcomes of the survey are presented in the conclusions and recommendations section.


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3 WHO THE SURVEY COVERS

3.1. Where questionnaires were returned from The various demographics indicating from where the questionnaires were returned are displayed in Tables 3.1a-d. Country

Table 3.1a – Country Number of respondents (n)

Percentage (%) of respondents

Australia 413 81 New Zealand 97 19 Total 510 100

Of the total achieved sample (n=510), 81% of responses were derived from Australia and 19% from New Zealand. This was the proportion expected based on the relative populations of each country. State / Territory or Island

Table 3.1b – State/territory or Island Australia (a)

New Zealand (b)

BASE: ALL RESPONDENTS (n) (n=413) (n=97) State / Island % %

New South Wales 30

Victoria 22 Queensland 21

South Australia 11

Australian Capital Territory 6 Western Australia 5 Tasmania 4

North Island 95 South Island 4 Not answered 0 1

TOTAL *99 100 * Does not add to 100% due to rounding. The sample was spread across the seven Australian states and territories, however not all locations adequately represent each of the three sample groups. This is discussed fully in section 2.2.


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Based on the recruitment method, the vast majority of the New Zealand sample was from the North Island (95%), and even though some respondents were also obtained via a national support group, the proportions remained skewed to the North Island, beyond the natural population division7. Geographical location

Table 3.1c – Geographical location

TOTAL Australia (a)

New Zealand (b)

BASE: ALL RESPONDENTS (n) (n=510) (n=413) (n=97) Geographic location % % %

City 76 75 81 Large regional centre 11 b12 a5 Small town, rural or remote 13 13 13

TOTAL 100 100 100 ab Indicates categories where there was a significant difference between the results in each column

(significance at the 95% confidence level) Three quarters of the total sample (76%) lived in cities, whereas around one in ten lived in large regional centres (11%) and a similar proportion lived in small towns, rural or remote areas (13%). For Australia there was some variation when compared to Australian Bureau of Statistics (ABS) data8. However, it should be pointed out that there are two particular variations that arise in any comparison, and they are: different sized centres are classed as large regional centres by different

countries and by the different Australian states/territories; and in this survey, people classified their own location.

There were also variations when the survey figures were compared to official 2001 Statistics New Zealand (SNZ) data9. The variations here are: the distribution was likely to have been affected by the increased proportion from

the North Island; and respondents classified their own location.

7 Statistics New Zealand 2002. 20012, Census of Population and Dwellings: Population Structure

and Internal Migration. Cat No 22.110, Statistics New Zealand, Wellington New Zealand. North Island = 76%; South Island = 24%.

8 Australian Bureau of Statistics (ABS). 20011, Census of Population and Housing, Australian Social Trends, Population Distribution: Population Characteristics and Remoteness. ABS, Canberra. 66% of the population reside in major cities; 21% in inner regional; and 10% in outer regional areas.

9 Statistics New Zealand 2002. 20012, Census of Population and Dwellings: Population Structure and Internal Migration. Cat No 22.110, Statistics New Zealand, Wellington New Zealand. 71% were recorded as residing in cities; 6% in secondary urban centres; and 23% in minor urban or rural areas.


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Whereas in Australia 12% of respondents said they lived in a large regional centre, there was a significantly smaller proportion of New Zealand respondents living in large regional centres and a larger proportion saying they lived in a city. Sample source

Table 3.1d – Sample source TOTAL Australia (a)

New Zealand (b)

BASE: ALL RESPONDENTS (n) (n=510) (n=413) (n=97) Sample Source % % %

Hospital / institution 32 b34 a22 Private clinic 34 33 37 Support group 34 32 41


(significance at the 95% confidence level) The sample was derived from three different sources: hospitals and medical institutions, private clinics or immunologists and support groups. Table 3.1d shows that the sample was evenly distributed between the three groups overall, and this was also true of the Australian sample. However, the New Zealand sample contained more respondents from support groups and significantly less from both hospitals/ medical institutions, and private clinics than the Australian sample.

3.2. About the respondent

Before looking at the results of the survey, it is important to understand who was actually answering the questionnaire. Therefore, a summary of various demographic factors is shown in Tables 3.2a-f. As this survey targeted a specific population, it was not expected that the demographic profile of the sample would match that of the whole population. Major differences are noted for information where relevant. Who responded

Table 3.2a – Who responded TOTAL Australia (a)

New Zealand (b)

BASE: ALL RESPONDENTS (n) (n=510) (n=413) (n=97) Person responding % % %

Main / joint grocery buyer 88 b90 a79 Person with an allergy 11 b9 a21 This question not answered 1 1 0


(significance at the 95% confidence level)


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The above table shows that only a small proportion of respondents overall were ‘the person with the food allergy’. Thus, the vast majority of respondents were the main or joint grocery buyers but not the person with the allergy (88%), with only one in ten (11%) being the person with the allergy10. There were significantly more people with food allergies answering the questionnaire in the New Zealand sample. This could relate to the smaller sample derived from hospitals or medical organisations and the resultant increased representation amongst both private clinics and support groups. Age of respondent

Table 3.2b – Age of respondent TOTAL Australia (a)

New Zealand (b)

BASE: ALL RESPONDENTS (n) (n=510) (n=413) (n=97) Age of respondent (years) % % %

15-24 2 2 5 25-34 32 34 28 35-44 53 b55 a43 45-54 9 b7 a17 55+ 3 2 6

TOTAL *99 *99 *99 ab Indicates categories where there was a significant difference between the results in each column

(significance at the 95% confidence level) * Does not add to 100% due to rounding Half of respondents (53%) were aged between 35 and 44 years and another third (32%) were aged between 25 and 34. One in ten (12%) were aged 45 or over, and only 2% were aged less than 25. In general, the respondents from New Zealand were older than their Australian counterparts, with significantly more aged between 45 and 54 years answering, and significantly less of those aged between 35 to 44 years doing so. Sex of respondent

Table 3.2c – Sex of respondent TOTAL Australia (a)

New Zealand (b)

BASE: ALL RESPONDENTS (n) (n=510) (n=413) (n=97) Sex of respondent % % %

Male 6 6 5 Female 94 94 95

TOTAL 100 100 100

10 ` Two-thirds (65%) of respondents with the most serious allergy themselves were also the main

grocery buyer.


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The majority of respondents were females (94%) whilst 6% were men. This was consistent across both Australia and New Zealand and indicates the likelihood of the main grocery buyer being female, as well as being the parent responsible for childcare (SNZ 20011; ABS 1995). Notably though, more males than females were the allergy sufferers (see section 3.4a). Education level

Table 3.2d – Education level TOTAL Australia (a)

New Zealand (b)

BASE: ALL RESPONDENTS (n) (n=510) (n=413) (n=97) Education level % % %

Up to secondary 28 28 29 Trade / technical qualifications 28 b26 a38 Tertiary qualifications 43 b46 a33

TOTAL *99 100 100 ab Indicates categories where there was a significant difference between the results in each column

(significance at the 95% confidence level) * Does not add to 100% due to rounding Two in five people who answered said they had tertiary qualifications (43%), whereas three in ten had either up to secondary or trade/technical qualifications (28% each). The Australian sample had significantly more tertiary educated respondents than the New Zealand sample (46% versus 33% respectively); whereas the New Zealand sample had more trade/technical educated respondents than the Australian sample (38% versus 26% respectively). When compared to the ABS or SNZ data, the respondents to the allergen survey were likely to have had more post-secondary education. ABS11 data indicate that the survey sample was skewed towards the tertiary educated; and SNZ12 data indicate a similar bias.

11 Source: ABS. Education and Work, Australia, May 20012 (6227.0). 17% of the population is

tertiary educated; 29% have technical or trade qualifications and 54% are educated up to secondary level;

12 Source: Statistics New Zealand 2001 Census: Education 20013. 12% of the population is tertiary educated; 20% have vocational education and 60% have been educated up to secondary level.


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Ethnic origin Table 3.2e – Ethnic origin TOTAL Australia

(a) New Zealand

(b) BASE: ALL RESPONDENTS (n) (n=510) (n=413) (n=97) Ethnic origin % % %

Aboriginal NA 1 - Torres Strait Islander NA 1 - Maori NA - 6 Pacific Islander NA - 3

A very small percentage of the Australian sample were either Aboriginal or Torres Strait Islander peoples (1% each), which reflected the proportion of Aboriginal and Torres Strait Islanders in the total Australian population according to ABS data13. Six percent of the New Zealand sample was Maori and 3% was Pacific Islander, which when compared to SNZ population data was half the proportion of Maori and Pacific Islanders in the total population14. Main language at home

Table 3.2f – Main language at home TOTAL Australia (a)

New Zealand (b)

BASE: ALL RESPONDENTS (n) (n=510) (n=413) (n=97) Main language at home % % %

English 97 97 99 Other 3 3 1

TOTAL 100 100 *99 * Does not add to 100% due to rounding The vast majority of respondents said that English was the main language spoken at home (97% overall). This was similar for both Australia and New Zealand.

13 Source: ABS 20013 Census of Population and Housing. Population Distribution, Indigenous

Australians. (4705.0). 2.3% of the total population of Australia is Aboriginal or Torres Strait Islander.

14 Source: Statistics New Zealand 20014&5 Census Snapshot 4 (Maori) and Snapshot 6 (Pacific Peoples). 15% of the total New Zealand population is Maori and 6.5% is Pacific Islander.


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3.3. About the household The household demographics are as shown in Tables 3.3a-d. Household income

Table 3.3a – Household income Australia AUD (a)

New Zealand NZD (b)

BASE: ALL RESPONDENTS (n) (n=413) (n=97) Household income % %

<$25,000 8 7 $25,000 - $39,999 b14 a6 $40,000 - $74,999 34 31 $75,000 - $100,000 21 19 >$100,000 b18 a33 Not answered 5 4

TOTAL 100 100 ab Indicates categories where there was a significant difference between the results in each column

(significance at the 95% confidence level) It should be noted that the dollar values represented relate to the currency in each country, as shown on the questionnaire. No attempt was made to convert to a common currency. The New Zealand sample varied from the Australian in that there were significantly fewer people earning between $25,000 and $40,000 (6% versus 14% Australia), and significantly more earning over $100,000 (33% versus 18% Australia). Using the high point for the lowest category, a mid-point for the three middle ranges, and the low point for the highest category, a calculation yields an average income of approximately $71,000 [NZD] for New Zealand and $63,000 [AUD] for Australia. Note that all figures were rounded to the nearest thousand dollars.


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Household structure Table 3.3b – Household structure TOTAL Australia

(a) New Zealand

(b) BASE: ALL RESPONDENTS (n) (n=510) (n=413) (n=97) Household structure % % %

Single person, living alone 1 b1 a3 Single person, living with child (ren)

6 6 5

Couple, living without child (ren) 5 b2 a16 Couple, living with child (ren) 87 b90 a74 Unrelated adults 1 1 1

TOTAL 100 100 *99 ab Indicates categories where there was a significant difference between the results in each column

(significance at the 95% confidence level) * Does not add to 100% due to rounding The vast majority of the respondents were couples living with children (87%). There were significantly more couples with children for Australia than for Zealand (90% versus 74% respectively), and significantly more couples without children in the New Zealand sample than the Australian one (16% versus 2% respectively). Ages of children living at home

Table 3.3c – Age of children living at home TOTAL Australia (a)

New Zealand (b)

BASE: THOSE WITH CHILDREN (n) (n=481) (n=402) (n=79) Ages of children at home (years) %* %* %*

<3 41 41 42 3-7 66 b69 a52 8-11 33 34 25 12-15 12 11 13 16-17 5 5 5 18+ 4 b3 a8

ab Indicates categories where there was a significant difference between the results in each column (significance at the 95% confidence level)

* Exceeds 100% as multiple responses allowed.

There were three major clusters in terms of the age of any children living at home: a fifth of the respondents (41%) had a child aged under three years old in their

household; two thirds (66%) had a child aged between three and seven years old; and a third (33%) had children aged between eight and eleven years old.


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In addition, one fifth (21%) of the respondents had a child aged 12 years or over in the household, with 4% of these being 18 years and over. The Australian sample varied from the New Zealand sample in relation to the proportion that had a child aged between three and seven in the household – there were significantly more amongst Australian respondents than amongst New Zealand respondents (69% versus 52% respectively). Conversely, there were significantly more children aged 18 years and over included in the New Zealand sample (8% versus 3% in Australia). Number of people in the household with allergies

Table 3.3d – Number of people in the household with allergies

TOTAL Australia (a)

New Zealand (b)

BASE: ALL RESPONDENTS (n) (n=510) (n=413) (n=97) Number of people in household with allergies

% % %

One 78 76 84 Two 19 21 14 Three 2 2 2 Four 1 1 0

TOTAL 100 100 100

The majority of households (78%) had only one person in the household with a food allergy, one in ten (19%) had two persons and the remainder (3%) had more than two people with allergies. The samples for both countries were very similar on this measure.


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3.4. About the allergies The final demographics are about the allergies of those in the household. These are shown in Tables 3.4a-f. Age of person with the most serious allergy

Table 3.4a – Age of person with most serious allergy

TOTAL Australia (a)

New Zealand (b)

BASE: ALL RESPONDENTS (n) (n=510) (n=413) (n=97) Age of person with most serious allergy (years)

% % %

< 3 24 24 24 3-5 28 29 25 6-12 33 b35 a22 13-17 4 4 2 18-24 4 3 6 25+ 8 b4 a21

TOTAL *101 *99 100 ab Indicates categories where there was a significant difference between the results in each column

(significance at the 95% confidence level) * Does not add to 100% due to rounding The majority of those with the most serious food allergies were children, with around: a quarter (24%) aged under three years old; a further quarter (28%) aged between three and five years old; and a third (33%) aged between six and twelve years old.

There was a sharp decrease in the ages of those with the most serious allergies from the age of 12 years old. This may not necessarily indicate a tendency for allergies to diminish past this age but could be because more diagnosis occurs before the age of 12 years. Some differences in age were evident by country, with the Australian sample including significantly more children aged six to twelve years old than the New Zealand sample (35% versus 22% respectively). Conversely, the New Zealand sample includes significantly more adults than the Australian sample (21% versus 4%).


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Sex of person with most serious allergy Table 3.4b – Sex of person with most serious allergy

TOTAL Australia (a)

New Zealand (b)

BASE: ALL RESPONDENTS (n) (n=510) (n=413) (n=97) Sex of person with most serious allergy

% % %

Male 56 b58 a48 Female 44 b42 a53

TOTAL 100 100 *101 ab Indicates categories where there was a significant difference between the results in each column

(significance at the 95% confidence level) * Does not add to 100% due to rounding More than half of the respondents recorded that the person with the most serious food allergy was male (56% versus 44% who said female). Again, there was a distinction by country, with Australians more likely than New Zealanders to report that males had the most serious allergy (58% versus 48% respectively). Identity of person with most serious allergy

Table 3.4c – Identity of person with most serious allergy

TOTAL Australia (a)

New Zealand (b)

BASE: ALL RESPONDENTS (n) (n=510) (n=413) (n=97) Person with most serious allergy % % %

Self 9 b6 a21 Partner 1 1 2 Child 90 b93 a77


(significance at the 95% confidence level) One in ten respondents (9%) were themselves the ‘person with the most serious food allergy’ and the vast majority of the remainder were children (90%). In 1% of cases the person with the ‘most serious food allergy’ was the partner of the respondent. There were differences by country, with a significantly larger number of respondents in New Zealand answering on their own behalf (21%) compared to only 6% of Australians answering for themselves.


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Total allergies in respondent households Table 3.4d – Total allergies in the household

TOTAL Australia (a)

New Zealand (b)

BASE: ALL RESPONDENTS (n) (n=510) (n=413) (n=97) Total allergies in household (Q3, Q4, Q8)

%* %* %*

Peanuts 78 b81 a65 Tree nuts 55 b59 a37 Egg 53 53 54 Milk 39 b36 a52 Shellfish 21 21 23 Fish 16 16 18 Soy 15 b13 a24 Sesame seeds 14 b15 a8 Wheat 13 b11 a23 Sulphites 10 10 9 Other allergies** 19 19 21


* Exceeds 100% as multiple responses allowed. ** 'Other allergies' included fruits, vegetables, meat, colourings and flavourings, etc. The questionnaire (Appendices B & C) asked three questions about food allergies in the household (Q3, Q4 and Q8). The question that was completed depended on the number of people in the household. All responses were totalled and a variable called 'total allergies' was formed. As can be seen, the four major allergies in households were: peanuts (78%); tree nuts (55%); egg (53%); and milk (39%).

Amongst these four categories, the occurrence of three of the major food allergies varied by country, with the Australian sample significantly more likely to include people reporting a peanut allergy than the New Zealand sample (81% versus 65% respectively); and this was also the case for tree nuts (59% versus 37% respectively). However, the reverse was true for milk, with 52% of the New Zealand sample reporting milk allergies compared to only 36% of the Australian sample. There was no variation by country for the egg allergy, with 53% of the Australian sample and 54% of the New Zealand sample reporting this allergy. Other significant differences between the two countries can be seen in Table 3.4d.


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NOTE: In this survey, 78% of respondents indicated that there was only one person in their household with a serious food allergy. The average number of allergies per person for these households was 3.1. This has an impact when considering respondents' answers by particular allergies as a lot of cross over effects can be seen.

Most serious food allergies in the household

Table 3.4e – Most serious food allergies in the household

TOTAL Australia (a)

New Zealand (b)

BASE: ALL RESPONDENTS (n) (n=510) (n=413) (n=97) Most serious food allergies in household (Q4 / Q8)

% % %

Peanuts 78 b81 a65 Tree nuts 54 b57 a37 Egg 52 52 54 Milk 37 b33 a52 Shellfish 20 20 21 Soy 14 b12 a23 Fish 14 14 17 Sesame seeds 13 b14 a7 Wheat 10 b8 a21 Sulphites 9 9 9 Other allergies 16 16 18


The allergens causing the most serious food allergies in the household were similar to the four major allergies discussed in the section on total household allergies above, i.e.: peanuts (78%); tree nuts (54%); egg (52%); and milk (37%).

Again, the occurrence of three of these varied by country, similar to the effect discussed above. Due to the similarity of responses for both total allergies and serious allergies, the reporting of results in this report will be by total allergies in the household.


37

Membership of support group Table 3.4f – Membership of support group TOTAL Australia

(a) New Zealand

(b) BASE: ALL RESPONDENTS (n) (n=510) (n=413) (n=97) Membership of a support group (Q21a)

% % %

Yes 51 b47 a67 No 48 b52 a33 Not answered 1 1 0


A half of the sample (51%) said they belonged to an allergy support group. Membership levels were significantly higher in New Zealand than in Australia (67% versus 47% respectively). However, this was most likely because a higher proportion of the New Zealand sample than the Australian sample was derived from contact via a support group. Further detail about support groups is included at section 5.5.

Data were analysed by some of these factors to ascertain areas of significant difference. These will be commented on in the remaining text only where significant differences arise.


38

4 IDENTIFICATION AND DIAGNOSIS OF THE MOST SERIOUS ALLERGY

4.1. How the allergy was first identified (Q9) Respondents were asked how the food allergy was first identified for the person with the most serious allergy. Results are shown in Table 4.1. Table 4.1 Identification of the allergy Q9 How was the food allergy first identified for the person with the most serious food allergy? PLEASE

TICK ALL THAT APPLY

COUNTRY

TOTAL SAMPLE

Australia (a)

New Zealand

(b) BASE: ALL RESPONDENTS (n) (n=510) (n=413) (n=97) %* %* %* Had a reaction 93 92 95 From a parent 12 12 13 Worked it out for myself 9 8 11 Skin / prick test 6 6 5 From an alternative health practitioner 4 a2 b11 Paediatric immunologist 2 a3 b0 Allergy specialist 2 2 3 Blood test 2 a1 b5


* Adds to more than 100% due to multiple responses. In the vast majority of cases, the food allergy was identified following a reaction (93%). Around one in ten said they found out from a parent (12%) or worked it out for themselves (9%). Less than one in twenty respondents said they found out from an alternative health practitioner15 (4%), and this was recorded by significantly more New Zealanders than Australians in the sample (11% versus 2% respectively).

15 No specific definition was included for an alternative health practitioner, however the question

gave as an example a naturopath.


39

New Zealanders were also significantly more likely than Australians to say they found out via a blood test (5% versus 1% respectively), whereas Australians were significantly more likely than New Zealanders to say they found out from a paediatric immunologist (3% versus 0% respectively). Those who had soy allergies in the household (15% of the sample, as seen in Table 3.4d) were significantly more likely than for other allergies to say they had found out from a parent (20%); whereas both wheat and 'other' allergies16 for example, were significantly more likely than others to have been identified by an alternative practitioner (9% and 8% respectively). Where there was a sulphite or wheat allergy17 in the household, respondents were significantly more likely to say they had worked it out for themselves (22% and 20% respectively)18. Where the person with the most serious food allergy was an adult, they were significantly more likely than serious allergy sufferers of other ages to say they had worked it out for themselves (19%)19.

16 10% and 16% of the sample, respectively, as seen in Table 3.4d. 17 9% and 10% of the sample, respectively, as seen in Table 3.4d. 18 Note that these data are not shown in the tables included in this report. The reader is directed to

the full set of data tables for more information. 19 These data are not shown in the report tables.


40

4.2. Length of time since the food allergy was first identified for the person with the most serious allergy (Q10) Respondents were asked how long it was since the food allergy was first identified for the person with the most serious allergy. Results are shown in Table 4.2. Table 4.2 Length of time since allergy was first identified Q10 Approximately how long ago was the food allergy first identified for the person with the most serious

food allergy?

COUNTRY

TOTAL SAMPLE

Australia

(a)

New Zealand

(b) BASE: ALL RESPONDENTS (n) (n=510) (n=413) (n=97) % % % Less than 6 months ago 5 4 7 More than 6 months but less than a year 9 8 10 More than a year but less than two years 15 15 18 More than two years ago 71 72 65 Can't remember <1 1 0


(significance at the 95% confidence level) About three-quarters of food allergies had been identified more than two years previously (71%). For 15% of respondents, the allergy had been identified between one and two years previously. Very few had been identified within the previous six months (5%), and one in ten (9%) had been diagnosed more than six months previously, but not more than a year. The recruitment criteria for those people identified through hospitals and private clinics (see Appendix D) specifically requested that selection for the survey was to be restricted to clients that had been diagnosed less than two years previously. Accordingly, one would expect the bias to be from support groups (some of which were mailed at random). However, the sample achieved via hospital / institutional recruiters (73%) as well as the support groups sample (78%) had a significantly greater number who had been diagnosed more than two years previously compared to private clinician recruitment (61%). It is therefore, difficult to explain why there was such a variation from the recruitment criteria. One possibility is that the person with the most serious food allergy was not the person in the household who was initially selected for participation by the recruiter. There was no significant difference in the length of time since the allergy was first identified by country.


41

4.3. Who diagnosed the most serious food allergy (Q11a/b) Respondents were asked whether a formal diagnosis was made for the person with the most serious food allergy. The majority (97%) said a formal diagnosis had been made. The propensity to have had a formal diagnosis decreased slightly as the age of the person with the most serious food allergy increased; i.e. 91% of those aged 18 years or over had a formal diagnosis, whereas 99% of those aged under five years had their allergy formally diagnosed20. Those respondents who had a formal diagnosis were then asked who had performed or undertaken this. Results are shown in Table 4.3a. Table 4.3a Who made the formal diagnosis for the person with the most

serious food allergy Q11b Who made the formal diagnosis for the person with the most serious food allergy?

SAMPLE SOURCE COUNTRY

TOTAL SAMPLE

Hospital (a)

Private

(b)

Support Groups

(c)

Australia

(d)

New Zealand

(e) BASE: THOSE FORMALLY

DIAGNOSED (n)

(n=496) (n=158) (n=168) (n=170) (n=403) (n=93)

%* %* %* %* %* %* A doctor specialising in allergies

90 91 89 91 e92 d82

A GP / doctor / medical practitioner

37 32 39 40 36 44

A dietitian 5 b7 a3 5 4 8 An alternative health practitioner

3 1 5 3 e2 d9

Not answered 1 1 1 0 1 1 abcde Indicates categories where there was a significant difference between the results in each column

(significance at the 95% confidence level) * Adds to more than 100% due to multiple responses, that is, several avenues may have contributed to

the final diagnosis.

20 Not shown in a table.


42

For the total sample, the majority of diagnoses were made by a doctor who specialises in allergies (90%). In combination with the previous question, Q9, the method of diagnosis indicates that only a very small proportion of this sample was self-diagnosed. Given that a large part of the sample was derived from hospitals or medical institutions and private specialists, it is inevitable that this would be relatively high for the sample in total. However, as indicated in the table, the level of 'official' diagnosis was consistent across the three sample sources even where the sample was derived from support groups. In fact there were only five (1%) Australians and three New Zealanders (3%) who had not been diagnosed by a medical practitioner or dietitian. Amongst the Australian sample, there was a significantly larger proportion that had been diagnosed by a doctor who specialises in allergies than in the New Zealand sample (92% versus 82% respectively). Conversely, there was a significantly higher proportion in the New Zealand sample that had been diagnosed by an alternative health practitioner (9% versus 2% respectively). The results are shown in Table 4.3b by the age of the person with the most serious food allergy. Table 4.3b Who made the formal diagnosis for the person with the most

serious food allergy AGE OF PERSON WITH ALLERGY

(YEARS)

TOTAL SAMPLE

Under 3 (a)

3-5 (b)

6-12 (c)

13+ (d)

BASE: THOSE FORMALLY DIAGNOSED (n) (n=496) (n=119) (n=143) (n=162) (n=69) %* %* %* %* %* A doctor specialising in allergies 90 91 cd96 b89 b81 A GP / doctor / medical practitioner 37 b40 acd27 b40 b48 A dietitian 5 d8 4 4 a1 An alternative health practitioner 3 b4 ad0 2 b6 Not answered 1 1 0 0 3

abcd Indicates categories where there was a significant difference between the results in each column (significance at the 95% confidence level)

* Adds to more than 100% due to multiple responses. As can be seen, the older the person with the most serious allergy, the less likely they were to have been diagnosed by a doctor who specialises in allergies and the more likely they were to have been diagnosed by a GP or medical practitioner.


43

4.4. How the most serious food allergy was formally diagnosed (Q11c) Respondents were asked how the food allergy was formally diagnosed for the person with the most serious allergy. Results are shown in Table 4.4. Table 4.4 How the allergy was formally diagnosed Q11c How was the formal diagnosis made for the person with the most serious food allergy? PLEASE

TICK ALL THAT APPLY

COUNTRY

TOTAL SAMPLE

Australia (a)

New Zealand

(b) BASE: THOSE FORMALLY DIAGNOSED (n) (n=496) (n=403) (n=93) %* %* %* Skin prick test 91 b93 a83 RAST (Blood test) 36 b30 a61 Elimination diet 20 19 23 Reaction 2 2 3 Challenge test 2 1 3 Description of symptoms 1 1 2 Medical history 1 1 0 Other 1 1 4


* Adds to more than 100% due to multiple responses. The major diagnostic method was the skin prick test, with nine in ten respondents (91%) saying this was how they were tested. The second most frequent method was the radioallergensorbent test (RAST) or blood test, with a third (36%) saying this test was used. An elimination diet was mentioned by one in five (20%). By country, Australian respondents were significantly more likely than New Zealand respondents to say they had been diagnosed with a skin prick test (93% versus 83% respectively). Conversely, New Zealanders were significantly more likely to say they had been diagnosed via a RAST or blood test (61% versus 30% respectively). Those who belonged to a support group were significantly more likely than those who were not members to say they were diagnosed with a RAST or blood test (42% versus 30% respectively).


44

5 KNOWLEDGE AND INFORMATION ABOUT THE ALLERGY

5.1. Respondents’ ability to identify food ingredients of concern (Q14) Respondents were presented with a list of words that are used to designate substances that can be of concern to persons with various food allergies. Not all food allergies were tested at question 14 – alternative names for shellfish and sulphites ingredients not being included in the list. Results are shown in the series of tables (a to g) that follow for total household allergies (i.e. any household that had a person with an allergy of the type concerned) for each of the substances associated with a particular food allergy.

Note: the food allergy types are not mutually exclusive, that is, many households had multiple allergies and were included in numerous calculations against each allergen. Thus, the results for each allergen may be affected by the presence of allergies other than the one under discussion.

Thirty one respondents (6%) did not answer this question. In each table, the 'average' or score for the total sample is presented in the column on the left side of the table. Comparisons are then made to the total or average for those with each particular food allergy. In general, levels of awareness of a food as containing a substance of concern were higher for those with an allergy to that particular substance, compared to the total sample. However, the somewhat low levels of recognition of substances of concern appear to indicate a gap in awareness about the potential of many substances to be an issue for the person with the allergy, as can be seen in the tables that follow (5.1a-g). The first results shown, in Table 5.1a, are for those with nut allergies (peanut and tree nuts).


45

Table 5.1a Awareness of substances of concern for those with nut allergies Q14 Which of the following words tell you that the ingredients that the person with the most

serious food allergy needs to avoid, may be present in the food product? PLEASE TICK ALL THAT APPLY

PERCENT CORRECT TOTAL ALLERGIES

TOTAL SAMPLE Peanut

(a) Tree nuts

(b) BASE: ALL RESPONDENTS (n) (n=510) (n=399) (n=279) Peanuts % % %

Praline* 34 41 46 Vegetable oil▲ 16 20 21

Tree nuts Marzipan 44 b52 a60 Praline* 34 41 46


* Praline, a nut confection, is presented twice because it can be an issue for those with either a peanut or a tree nut allergy21.

▲ Vegetable oil can include peanut oil. Most peanut oils are not allergenic as they are protein free – only those that are unrefined (cold pressed) may be problematic as they may still contain traces of proteins. However, mixed vegetable oils are very unlikely to be cold pressed. Peanut, sesame or soy components of vegetable oil are now required by the Code (Standard 1.2.4) to be declared on the food label.

For each of the substances listed, there was a higher than average recognition that praline and marzipan were substances of concern for both of the nut allergies, significantly so for marzipan. However, very few of those with peanut allergies in the household indicated that vegetable oil could be an issue, with only one in five respondents with peanut allergies (20%) in their household identifying this ingredient. It is not known whether this was because they had already found vegetable oil to be a minimal or no risk, or whether respondents were not aware that some vegetable oils may potentially contain cold pressed peanut oil, or whether the labelling was adequate (as mentioned previously, ingredients of vegetable oils that are potential allergens are now required under the provisions of the Code, to be declared)22.

21 Praline can contain both peanuts and/ or tree nuts. 22 While refined peanut oil has been found to contain hardly any allergenic proteins, cold pressed

and/or unrefined peanut and tree nut oils can contain allergens. (Jackson 2003).


46

The results are shown for milk allergies in Table 5.1b. Table 5.1b Awareness of substances of concern for those with a milk allergy Q14 Which of the following words tell you that the ingredients that the person with the most


PERCENT CORRECT TOTAL

ALLERGIES

TOTAL SAMPLE

Milk BASE: ALL RESPONDENTS (n) (n=510) (n=200) Milk % %

Whey 29 72 Butterfat 29 72 Lactose 28 68 Casein 26 64 Lactalbumin 23 42

Between a quarter (23% for lactalbumin) and three in ten respondents (29% for both whey and butterfat) on average identified the milk derivatives as substances of concern. Between two thirds (64% for casein) to three quarters of respondents (72% for both whey and butterfat) identified the substance of concern for milk allergens. The lowest awareness amongst respondents who had a milk allergy in the household was recorded for lactalbumin, with only 42% identifying this substance. Compared to the data shown in Table 5.1a for those with nut allergies, recognition of most substances of concern for those who have a milk allergy in the household was much higher (64%-72%, compared to 20%-60% for nut allergies).


47

The results are shown for those with a soy allergy in Table 5.1c. Table 5.1c Awareness of substances of concern for those with a soy allergy Q14 Which of the following words tell you that the ingredients that the person with the most



ALLERGIES

TOTAL SAMPLE

Soy BASE: ALL RESPONDENTS (n) (n=510) (n=78) Soy % %

Tofu 8 46 Textured vegetable protein 18 36 Tempeh 5 13 Tamari 4 10

Almost a half of respondents (46%) recognised tofu as containing a substance of concern, and around a third recognised that there could be an issue with textured vegetable protein (36%). However, there were low levels of recognition for both tamari (10%) and tempeh (13%), which may in part be due to a lack of recognition that the ingredients or products listed (tempeh, tamari) contain soy.


48

The results are shown for those with a wheat allergy in Table 5.1d. Table 5.1d Awareness of substances of concern for those with a wheat

allergy Q14 Which of the following words tell you that the ingredients that the person with the most



ALLERGIES

TOTAL SAMPLE

Wheat

BASE: ALL RESPONDENTS (n) (n=510) (n=66) Wheat % %

Baker's flour 9 56

Thickener* 14 50 Semolina 7 38 Couscous 6 32

Cornflour▲ 5 29

Starch 5 29 Icing sugar mix 5 27 Textured vegetable protein 18 27 Maltodextrin◆ 5 18

▲ Cornflour could be derived from maize or wheat. ◆ Maltodextrin could be derived either from wheat or maize. * Some thickeners are wheat derived. A half or more of those respondents where a wheat allergy was present in the household were aware that baker's flour and thickener were substances of concern, with 56% and 50% respectively identifying these substances. Around a third were aware that semolina (38%) and couscous (32%) were of concern. Maltodextrin was the least likely ingredient to be identified, with only 18% nominating this as a substance of concern. It should be noted that in the Code, where a cereal or source of starch is wheat, rye, barley, oats or spelt then the specific name of the cereal must be declared (Standard 1.2.4).


49

The results are shown for those with an egg allergy in Table 5.1e. Table 5.1e Awareness of substances of concern for those with an egg allergy Q14 Which of the following words tell you that the ingredients that the person with the most



ALLERGIES

TOTAL SAMPLE

Egg BASE: ALL RESPONDENTS (n) (n=510) (n=272) Egg % %

Albumin 37 67

Ovalbumin 25 45

Around two-thirds of respondents with an egg allergy in the household (67%) were aware that albumin was a substance of concern, however less than half (45%) identified ovalbumin as being of concern. The results are shown for those with fish allergies in Table 5.1f. Table 5.1f Awareness of substances of concern for those with fish allergies Q14 Which of the following words tell you that the ingredients that the person with the most



SAMPLE TOTAL

ALLERGIES

Fish BASE: ALL RESPONDENTS (n) (n=510) (n=83) Fish % %

Anchovies 13 59 Surimi* 6 18

* Depending on the manufacturers formulation, surimi could also contain eggs, wheat, and shellfish Over half of those with a fish allergy in their household (59%) recognised that anchovies were a substance of concern.


50

Of some concern was that the level of recognition of surimi was very low. Only 6% of the total sample identified it and only around one in five of those had a fish in the household (18%). However, this could also indicate that many consumers did not know that ‘surimi’ was the more technical name for 'imitation crab stick' or ‘seafood extenders’. The results are shown for those with a sesame seed allergy in Table 5.1g. Table 5.1g Awareness of substances of concern for those with a sesame

seed allergy Q14 Which of the following words tell you that the ingredients that the person with the most



ALLERGIES TOTAL

SAMPLE Sesame seeds

BASE: ALL RESPONDENTS (n) (n=510) (n=72) Sesame seeds % %

Tahini 15 62

Three in five of the respondents with a sesame seed allergy (62%) recognised that tahini was a substance of concern. Summary The results suggest that while there was a reasonable level of recognition of common ingredient names for potential allergens, this was not universal. It decreased markedly with less common names and/or more ‘scientific’ terminology. Across the different sample sources, those derived from the support group sample were consistently more proficient at identifying many of the substances of concern, than were those from the two medical groups. The next most proficient was the hospital or institutional sample and the least proficient was the private clinicians23 sample. These results suggest that respondents who belonged to a support group were better informed about substances of potential concern.

23 Data not shown. The reader is referred to the full set of data tables for more information.


51

5.2. Sources of information (Q18)

Respondents were asked where they had obtained relevant information about the foods to avoid when the food allergy first became an issue for their household. The sources indicated are shown in Table 5.2. Table 5.2 Information sources for the allergy Q18 When a serious food allergy first became an issue in your household, where did you get the

relevant information about what food(s) and food ingredients(s) needed to be avoided? PLEASE TICK ALL THAT APPLY

COUNTRY Information obtained from. …

TOTAL SAMPLE

Australia (a)

New Zealand

(b) BASE: ALL RESPONDENTS (n) (n=510) (n=413) (n=97) %* %* %* A doctor specialising in allergies 78 b81 a66 An allergy support group 39 38 46 A dietitian 36 37 34 Books 36 37 31 A GP / doctor / medical practitioner 32 32 33 The web / Internet 31 32 29 A friend / acquaintance 13 14 10 Parents 8 8 10 The Manufactured Food Database▲ 7 b<1 a35 An alternative health practitioner 6 b4 a12 Trial and error 3 4 2 Pharmacist 1 2 0 Food manufacturer 1 1 0


* Adds to more than 100% due to multiple responses (i.e. people may have obtained information from more than one source).

▲ The Manufactured Food Database was not an option provided for in the Australian questionnaire but it was added by several Australian respondents as another source of information.

Three quarters of respondents (78%) said their major source of information was a doctor who specialises in allergies. The level recorded in Australia was significantly higher than that in New Zealand (81% versus 66% respectively). The next major sources of information for around a third of respondents were: • an allergy support group (39%); • a dietitian (36%); • books (36%); • a GP / doctor / medical practitioner (32%); and • the web or Internet (31%).


52

A third of New Zealand respondents (35%) identified the MFD as a source of information24. Even though this was a New Zealand initiative, a very small number of Australian respondents (<1%) also identified this source via free text option given in this question. New Zealanders were significantly more likely than Australians to nominate an alternative health practitioner as a source of information (12% versus 4% respectively).

5.3. Ease with which information about what ingredients to avoid was originally found (Q19) Respondents were asked whether they had found it easy or difficult to get the information they needed to help them avoid the foods of concern, when the allergy was first diagnosed. The results are shown in Table 5.3a. Table 5.3a Ease of getting information when allergy first identified Q19 When a serious allergy was first identified, was it easy or difficult to get the information you needed

to help you avoid the foods of concern?

SAMPLE SOURCE

TIME SINCE ALLERGY IDENTIFIED

TOTAL SAMPLE

Hospital

(a)

Private

(b)

Support Groups

(c)

Less than 1 year (d)

More than 1

year but less

than 2 (e)

2 years or more

(f)

BASE: ALL RESPONDENTS (n)

(n=510) (n=162) (n=174) (n=174) (n=70) (n=78) (n=360)

% % % % % % % It was easy 46 c54 c54 ab32 ef64 d47 d42 It was difficult 49 c40 c41 ab66 ef34 d50 d52 Don't know 4 5 5 2 1 1 5 Not answered 1 1 1 0 0 1 1

TOTAL 100 100 101* 100 99* 99* 100 * Does not add to 100% due to rounding. ab Indicates categories where there was a significant difference between the results in each column

(significance at the 95% confidence level) About the same proportion of respondents found it difficult (49%) as found it easy (46%) to find the information they needed when the food allergy was first diagnosed. Four percent said they could not remember how easy or difficult it had been.

24 The Manufactured Food Database (MFD), funded by the New Zealand Ministry of Health, is an

education package made available to clients when consulting a dietitian on allergen free diets. It lists ‘allergen free’ products in a database that is also accessible by the general public.


53

Respondents from the support group sample were significantly more likely to say they found it difficult (66%) than those in both of the 'official' sample groups (i.e. hospitals or medical institutions or private clinicians) for whom 40% and 41% respectively said it was difficult. Since the majority of the support group sample said they were officially diagnosed by hospital or by a private immunologist, it is quite likely that they joined the support group in order to obtain the information they felt they needed, following diagnosis. Respondents for whom the allergy had been identified more recently (within the last year) were significantly more likely to say they found it easy to find what they needed (64%), than those where the allergy had been identified long ago. In fact, ease diminished the farther ago identification had been, for example 47% where the allergy had been identified more than one year but less than two years ago, and 42% where the allergy had been identified more than two years ago. Those with a fish allergy were significantly more likely to say they found it difficult to get the information they needed, with 61% saying this25. There was no significant difference in perceptions between the two countries. Respondents were then asked to indicate what they found easy and what had been difficult about finding information when they first had the diagnosis. The question was open-ended and responses given were later coded for analysis. Major responses are displayed in Table 5.3b.

25 Not shown in the table.


54

Table 5.3b Ease with which information was found Q19a What made it easy / difficult?

COUNTRY

TOTAL SAMPLE

Australia (a)

New Zealand

(b) BASE: THOSE WHO SAID IT WAS EASY/DIFFICULT (n) (n=487) (n=392) (n=95) Easy %* %* %*

Help from medical source (GP, allergists, hospital) 14 14 14 By avoiding the substance 11 11 10 Support from dietitian 10 9 14 Member of a support group 8 9 6 Reading widely 6 8 0 Websites / Internet 6 6 6 Check all products 5 5 3

Difficult Too many names for the same thing 15 14 18 Hidden sources of the ingredient 10 b9 a15 Lack of/ or conflicting information 10 b8 a19 Inconsistent labelling 8 9 7 Lack of help from GP / health professionals 7 b4 a17 Traces of nuts found in too many products 5 5 3 'May contain' statements too widespread 4 5 4 Lack of support group 4 4 2

Not answered 3 3 3 ab Indicates categories where there was a significant difference between the results in each column

(significance at the 95% confidence level) * Adds to more than 100% due to multiple responses. The major reasons given for what made it easy to find the information that was needed was that the GP [general practitioner] or medical practitioners gave some assistance (14%); respondents could avoid the substance (unspecified how) (11%) or they had support from a dietitian (10%). The main reasons it was difficult was that there were too many names for the same thing (15%); there were hidden sources of the ingredient (10%) and that there was a lack of / or conflicting information (10%). These last two reasons were more likely to be stated by the New Zealand sample rather than the Australian sample, as shown in the table. New Zealanders were also significantly more likely to say that there was a lack of help from their GP or health professional than Australians (17% versus 4% respectively).


55

Those who had a wheat allergy in the household were significantly more likely than those with other food allergies to say that it was easy because they were a member of a support group (14%). Those who had sulphite or sesame seed allergies in their household said they had help from their GP, and this made it easier (21% and 27% respectively). Those who had milk, soy or wheat allergies in their household said that it was difficult because there were so many names for the same thing (22%, 24% and 23% respectively). Those with a fish allergy in the household said their major difficulty was that there was a lack of /or conflicting information (19%)26.

5.4. Type and source of instruction on how to identify ingredients of concern on food labels (Q20) Respondents were asked whether they had been given any instruction about how to identify the ingredients of concern on food labels. Results are shown in Table 5.4. Table 5.4 Instruction received on how to identify ingredients of concern on

food labels Q20a Were you shown at any time how to identify the ingredients of concern, using food labels?

SAMPLE SOURCE

TOTAL SAMPLE

Hospital (a)

Private

(b)

Support Groups

(c) BASE: THOSE FORMALLY

DIAGNOSED (n)

(n=496) (n=158) (n=168) (n=170)

% % % % Yes 46 b48 ac38 b51 No 51 b46 ac59 b48 Don't know 3 c6 3 a1 Not answered <1 1 1 0

TOTAL 100 101* 101* 100 abc Indicates categories where there was a significant difference between the results in each column

(significance at the 95% confidence level) * Does not add to 100% due to rounding. Of some concern is the fact that half of those who had a person 'at risk' of a serious food allergy in their household, said they had not been shown how to identify the substance of concern, using food labels.



56

Respondents from the private clinician sample were least likely to say they had received instruction about reading food labels to identify substances of concern. Three in five (59%) of this group said they did not receive any instruction, compared to half (48%) of those from the support group sample, and a similar proportion (46%) from the hospital sample. There was no difference by country.

5.5. Membership of a support group (Q21) Respondents were asked whether they belonged to a support group. A half (51%) said they did belong to a support group. Membership levels were higher in New Zealand sample than in Australia (67% versus 47% respectively), but since more questionnaires were sent out via the main support group in New Zealand, this is not surprising. Those who were members were then asked to write in the name of the support group they belonged to. Results are shown in Table 5.5. Table 5.5 Membership of support group Q21a Have you joined any group that provides information about food allergies? IF YES: Q21b What is

the name of the group you joined?

SAMPLE SOURCE COUNTRY

TOTAL SAMPLE

Hospital (a)

Private

(b)

Support Groups

(c)

Australia

New Zealand


(n=510) (n=162) (n=174) (n=174) (n=413) (n=97)

Australia % % % % % %

FACTS 35 bc22 ac10 ab73 43 0

New Zealand

Allergy New Zealand

12 c5 c9 ab22 0 64

Other groups 4 3 4 2* 4 3

No memberships 48 c69 c76 ab2* 52 33

No answer 1 1 1 1 1 0

TOTAL 100 100 100 100 100 100 abc Indicates categories where there was a significant difference between the results in each column

(significance at the 95% confidence level) * This was due to requests for questionnaires prompted by other sources such as manufacturing industry

referrals, which were included in this category.


57

The primary support group mentioned in Australia was the then Food Anaphylactic Children Training and Support Association (FACTS), now called Anaphylaxis Australia Inc. Seventy three percent of the total Australian sample recruited via a support group, belonged to this organisation. In New Zealand, the primary support group was Allergy New Zealand, with 64% of the total New Zealand sample belonging to this group. Since these two organisations were used to locate some of the sample, it is understandable that the proportions of respondents nominating each of these two groups would be high. Looking across the other two sample segments (i.e. hospitals and private clinics) the levels of membership were much less, as shown in table 5.5. Thus, two thirds of the hospital sample (69%) and three quarters of the private clinician sample (76%) were not members of any support groups. The corollary of this is that about a quarter (24%) to three in ten (30%) of respondents who were derived from 'official' sources belonged to a support group. Note: In the following text the actual numbers of respondents answering are shown in brackets. Respondents were more likely to belong to a support group if27: the allergy had been diagnosed more than two years ago. Fifty four percent

of respondents were members (194 respondents) compared to 39% (70 respondents) of those where the allergy had been diagnosed less than one year ago. Note that the propensity to belong to a support group increased along with the time since diagnosis, suggesting that opportunity may play a part in membership;

the person with the most serious allergy was a child. Fifty four percent of respondents who said the person with the most serious allergy was a child (250 respondents) versus only 20% (9) where the respondent themselves had the most serious allergy, belonged to a support group. In fact, membership was significantly higher amongst respondents where the child concerned was aged between three and twelve years old, than amongst other age groups. Three quarters of adults with the most serious allergy (74% or 42 respondents) did not belong to a support group;

the respondent was female. Fifty two percent of female respondents (249) said they were a member of a support group compared to 33% (10) of male respondents28.

the respondent was educated beyond secondary level. Only 43% (63) of respondents with secondary only education belong to a support group, compared to 55% (122) of those with some or completed tertiary study, and 51% (74) of those who have some or completed trade or technical study were members of a support group; and

27 These data are collated from the full set of data tables upon which this report is based. 28 Note the small base of males [n=30].


58

the respondent had a mid-high gross household income. Where the household had mid to high gross income levels, the propensity to belong to a support group was higher. That is, 56% (118) of those earning more than $75,000 and 52% (89) of those earning between $40,000 and $74,999, were members, compared to 40% (15) of those earning less than $25,00029 and 35% (23) of those earning between $25,000 and $39,999.

29 Note the small base [n=38].


59

6 MANAGING THE ALLERGY

6.1. Severe allergic reactions since allergy was first identified (Q13a) Respondents were asked whether the person with the most serious food allergy had had a severe allergic reaction since the allergy was first identified. The results are shown in Table 6.1a. Table 6.1a Occurrence of severe allergic reaction since the allergy was

identified Q13a Has the person with the most serious food allergy had a severe allergic reaction since the allergy

was identified?

COUNTRY TIME SINCE ALLERGY IDENTIFIED

TOTAL SAMPLE

Australia

(a)

New Zealand

(b)

less than 1 year (c)

More than 1 year but less than 2

(d)

2 years or more

(e)


(n=510) (n=413) (n=97) (n=70) (n=78) (n=360)

% % % % % % Yes 42 40 a52 e26 e33 cd48 No 57 b59 48 e74 e65 cd52 Not answered 1 1 0 0 1 0

TOTAL 100 100 100 100 99* 100 abcde Indicates categories where there was a significant difference between the results in each column

(significance at the 95% confidence level) * Does not add to 100% due to rounding. Just under half of those with a food allergy (42%) had had a severe allergic reaction since the allergy was first identified. The occurrence of severe allergic reaction was significantly higher in New Zealand than in Australia (52% versus 40% respectively). As indicated, the propensity to have had an adverse reaction increased along with the time since the allergy was first identified. There was no significant difference by membership of an allergy support group. By allergen, some with the most serious food allergy had been more susceptible to a severe allergic reaction than others. Those with the following allergies in the household had the highest occurrence of severe allergic reaction since the allergy was first identified: sulphites (65%); milk (56%); fish (54%); other allergies (50%);


60

sesame seeds (47%); and egg (47%).

The occurrence of adverse reaction for those with peanut and / or tree nut allergies were the two least reported, despite being the two highest reported allergies in the households of people with allergies (Table 3.4d): peanuts (41%); and tree nuts (42%).

The reasons for these differences were not further explored, though may be due to differences in the ease with which these allergies can be managed. Respondents who had a severe allergic reaction were then asked to describe the circumstances in which the reaction happened. The major responses are shown in Table 6.1b. Table 6.1b Description of severe allergic reaction, by country Q13b If yes, can you please describe the circumstances in which this happened?

COUNTRY

TOTAL SAMPLE

Australia (a)

New Zealand

(b) BASE: THOSE WHO HAVE HAD A SEVERE ALLERGIC REACTION SINCE

ALLERGY WAS IDENTIFIED (n)

(n=217) (n=167) (n=50)

%* %* %* Accidentally imbibed / drank / consumed 36 b33 a48 Came into contact with food substance – not consumed 21 23 16 Unlabelled food / incorrectly labelled 14 14 14 Offered offending food by unsuspecting person 14 14 16 Incorrectly advised of ingredients in pre-prepared food 8 7 12 Traces of substances in unexpected product (lollies) 6 6 6 Substance being present in unidentified food 4 b5 a0 Described symptoms (misunderstood question) 18 19 14


* Adds to more than 100% due to multiple responses. After diagnosis, the most commonly given reason for having a repeat severe food allergic reaction was accidentally imbibed / drank / consumed (36%) followed by a fifth (21%) who came into contact with the food substance but had not consumed it. Of some note for food labelling, 14% attributed their severe allergic reaction directly to unlabelled or incorrectly labelled food, and 6% attributed their severe allergic reaction to traces of substances in unexpected products.


61

The reason that the food was accidentally imbibed / drank / consumed was more likely to be given by respondents in New Zealand than those in Australia (48% versus 33%), whereas Australians were more likely than New Zealanders to say that it was caused by the substance being present in unidentified food (5% versus 0% respectively. Major responses are shown by membership of an allergy support group in Table 6.1c. Table 6.1c Description of severe allergic reaction, by membership of support

group Q13b If yes, can you please describe the circumstances in which this happened?

MEMBERSHIP OF ALLERGY

SUPPORT GROUP

TOTAL SAMPLE

Yes (a)

No (b)

BASE: THOSE WHO HAVE HAD A SEVERE ALLERGIC REACTION SINCE

ALLERGY WAS IDENTIFIED (n)

(n=217) (n=114) (n=101)

%* %* %* Accidentally imbibed / drank / consumed 36 34 40 Came into contact with food substance – not consumed 21 22 20 Unlabelled food / incorrectly labelled 14 18 10 Offered offending food by unsuspecting person 14 b9 a21 Incorrectly advised of ingredients in pre-prepared food 8 10 7 Traces of substances in unexpected product (lollies) 6 b10 a1 Substance being present in unidentified food 4 4 1 Described symptoms (misunderstood question) 18 17 19


* Adds to more than 100% due to multiple responses. Members of a support group were significantly more likely than non-members to nominate the reason that there were traces of the substance in unexpected products (10% versus 1% respectively). In comparison, non-members were significantly more likely than members to say that the cause was that the offending food was offered by an unsuspecting person (21% versus 9% respondents).


62

6.2. Approach to eating foods containing substances of concern (Q15) Respondents were asked to indicate how the person(s) in their household would approach eating foods that contain specific ingredients of concern for the allergy they had. Results are shown in Table 6.2, arranged in descending order of propensity to avoid. Table 6.2 Approach to eating foods that contain the following… Q16 Considering all the members of your household who have food allergies, as far as you know, how

would each person(s) in your household with food allergy / allergies approach eating foods with the following ingredient(s)? TICK ONE BOX FOR EACH OF THE PROBLEM INGREDIENTS FOR YOUR HOUSEHOLD

Peanuts

(ground

nuts)

Tree

nuts (eg.

cashews

walnuts)

Shell-

fish

Fish Egg Sesame

seeds

Milk Wheat Soy Sulphites

(food

additives

220-225,

228)

BASE: RESPONDENTS

WITH THAT ALLERGY IN

THEIR HOUSEHOLD (n)

(n=399) (n=279) (n= 109)

(n=83) (n= 272)

(n=72) (n= 200)

(n=66) (n= 78)

(n=51)

% % % % % % % % % %

They never eat it at all

80 72 72 66 62 61 60 42 27 22

They never eat it knowingly

16 22 19 19 20 26 20 18 26 18

They try, but can't avoid it completely

2 1 4 4 11 6 14 24 32 48

The foods that were easiest to avoid were nuts (peanuts and tree nuts) and seafood (fish and shellfish), with between two thirds and four fifths stating these foods were never eaten at all, and very low proportions (less than 5%) for they try, but can't avoid it completely. Egg, sesame seeds and milk record similar results, with three fifths stating they never eat it at all, a fifth to a quarter stating they never eat it knowingly and the rest (between 6% and 14%) stating they try, but can't avoid it completely.


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It appeared that those with wheat, soy and sulphites allergies found it hardest to completely avoid (i.e. never eat it at all) the substances of concern. As can be seen from Table 6.2, only a quarter of respondents with an allergy to soy or sulphites actually manage to avoid these ingredients completely (27% and 22% respectively). Those with a wheat allergy perform slightly better, with two in five (42%) being able to completely avoid the substance of concern. For the remaining allergies, between three in five (60%) and four in five (80%) managed to never eat the substance of concern.

6.3. Ways in which food allergies are managed (Q16) Respondents were given a list of things they could do to help manage the food allergy or allergies of the 'at risk' person(s) in their household. They were asked to indicate how often they did each of the things on the list. Results are shown in the series of tables that follow.

It should be noted that the majority of households had multiple allergies, and hence, the results are not always clear by allergen.

The first results shown, in Table 6.3a, are for buying unprocessed foods where possible. Table 6.3a Methods of managing the allergy - buying unprocessed foods

where possible Q16 As the person who mainly buys the groceries, how often do you do the following things to

help manage the food allergy / allergies of all the persons in your household? PLEASE TICK ONE BOX FOR EACH STATEMENT

MEMBERSHIP OF ALLERGY SUPPORT GROUP

TOTAL SAMPLE

Yes (a)

No (b)

BASE: ALL RESPONDENTS (n) (n=510) (n=259) (n=247) % % % Always 20 b23 17 Often 52 b57 47 Occasionally 18 14 a21 Never 6 3 a10 Don't know / not answered 4 3 a6

Total 100 100 101* ab Indicates categories where there was a significant difference between the results in each column

(significance at the 95% confidence level) * Does not add to 100% due to rounding.


64

A fifth (20%) always reported buying unprocessed foods where possible, with a further half (52%) often buying unprocessed foods where possible. Only 6% never bought unprocessed foods where possible. Members of allergy support groups were significantly more likely than non-members to buy unprocessed foods where possible (80% versus 64% always / often scores respectively). When looking at the different allergies30, some respondents were more likely to buy unprocessed foods where possible than others. The three allergies for which respondents were most likely to always buy unprocessed foods where possible were: wheat (35%); soy (35%); and sulphites (29%).

The results shown in Table 6.3b are for buying foods in sealed packages where possible. Table 6.3b Methods of managing the allergy - buying foods in sealed

packages where possible Q16 As the person who mainly buys the groceries, how often do you do the following things to



TOTAL SAMPLE

Yes (a)

No (b)

BASE: ALL RESPONDENTS (n) (n=510) (n=259) (n=247) % % % Always 29 b38 20 Often 44 46 42 Occasionally 16 10 a23 Never 3 1 a4 Don't know / not answered 7 4 a11

TOTAL 99* 99* 100 ab Indicates categories where there was a significant difference between the results in each column

(significance at the 95% confidence level) * Does not add to 100% due to rounding. Just under a third (29%) always buy foods in sealed packages where possible, with a further 44% often buying foods in sealed packages where possible. Only 3% never buy foods in sealed packages where possible.



65

Again, members of an allergy support group were significantly more likely than non-members to always buy foods in sealed packages where possible (38% versus 20% respectively). There were no notable differences by the different allergies31. The results shown in Table 6.3c are for reading food labels carefully. Table 6.3c Methods of managing the allergy - reading food labels carefully Q16 As the person who mainly buys the groceries, how often do you do the following things to



TOTAL SAMPLE

Yes (a)

No (b)

BASE: ALL RESPONDENTS (n) (n=510) (n=259) (n=247) % % % Always 90 b96 83 Often 8 3 a13 Occasionally 1 - a3 Never - - - Don't know / not answered 1 1 1


(significance at the 95% confidence level) Ninety percent respondents always read food labels carefully, with 8% often reading food labels carefully. No respondents stated they never read food labels carefully. Members of an allergy support group were significantly more likely than non-members to always read food labels carefully (96% versus 83% respectively). When looking at the different allergies32, some respondents were more likely to read food labels more carefully than others. The three allergies for which respondents were most likely to always read food labels carefully were: milk (96%); sulphites (94%); and sesame seeds (94%).

31 Not shown in the table. 32 Not shown in the table.


66

The results shown in Table 6.3d are for contacting the food manufacturer about what was in the food. Table 6.3d Methods of managing the allergy - contacting the food

manufacturer about what is in the food Q16 As the person who mainly buys the groceries, how often do you do the following things to



TOTAL SAMPLE

Yes (a)

No (b)

BASE: ALL RESPONDENTS (n) (n=510) (n=259) (n=247) % % % Always 10 b14 6 Often 20 b30 10 Occasionally 37 40 34 Never 29 12 a45 Don't know / not answered 4 3 6

TOTAL 100 99* 101* ab Indicates categories where there was a significant difference between the results in each column

(significance at the 95% confidence level) * Does not add to 100% due to rounding. Ten percent respondents said they always contact the food manufacturer about what is in the food, with a further 20% often contacting the food manufacturer about what is in the food. However, the majority of respondents generally did not contact the food manufacturer about what was in the food, with just over a third (37%) stating they did this only occasionally and just under a third (29%) saying they had never contacted the food manufacturer about what was in the food. Again, members of an allergy support group were significantly more likely than non-members to contact the food manufacturer about what was in the food (44% versus 16% always / often). When looking at the different allergies33, some respondents were more likely to contact the food manufacturer than others. The three allergies for which respondents were most likely to always contact the manufacturer were: tree nuts (12%); shellfish (11%); and sesame seeds (11%).



67

Those with wheat allergies were the least likely to contact (35% said they would never contact) the manufacturer. The results shown in Table 6.3e are for buying loose or bulk foods. Table 6.3e Methods of managing the allergy - buying loose or bulk foods Q16 As the person who mainly buys the groceries, how often do you do the following things to



TOTAL SAMPLE Yes

(a) No (b)

BASE: ALL RESPONDENTS (n) (n=510) (n=259) (n=247)

% % %

Always 2 2 2

Often 10 7 a13

Occasionally 38 38 38

Never 43 b48 37

Don't know / not answered 7 5 10


(significance at the 95% confidence level) Only 2% of respondents always buy loose or bulk foods, and 10% often buy loose or bulk foods. Just under half (43%) never buy loose or bulk foods. Members of an allergy support group were significantly more likely than non-members to never buy loose or bulk foods (48% versus 37%)34. There was minimal variation overall. Those with fish and shellfish allergies were most likely to say they would never buy loose or bulk food (47% each) and those with sesame seeds and wheat allergies in the household least likely to say they would never buy loose or bulk food35, 36. The results shown in Table 6.3f are for checking food lists provided by allergy support group(s).

34 Not shown in the table. 35 Note that analysis by allergy is confounded by the fact that many households have multiple

allergies present and responses for individual allergens are therefore impacted. 36 Not shown in the table.


68

Table 6.3f Methods of managing the allergy - checking food lists provided by allergy support group(s)

Q16 As the person who mainly buys the groceries, how often do you do the following things to help manage the food allergy / allergies of all the persons in your household? PLEASE TICK ONE BOX FOR EACH STATEMENT


TOTAL SAMPLE Yes

(a) No (b)


% % %

Always 26 b41 11

Often 24 b32 16

Occasionally 23 18 a28

Never 22 5 a38

Don't know / not answered 5 3 a7

TOTAL 100 99* 100 ab Indicates categories where there was a significant difference between the results in each column

(significance at the 95% confidence level) * Does not add to 100% due to rounding. A quarter (26%) of all respondents always check food lists provided by allergy support group(s), with a further 24% often checking food lists provided by allergy support group(s). A fifth (22%) never check food lists provided by allergy support group(s), and they were mainly non-members. Members of an allergy support group were significantly more likely than non-members to check food lists provided by an allergy support group(s) (73% versus 27% always / often respectively). When looking at the different allergies, some respondents were more likely to check food lists provided by allergy support groups(s) than others. The three allergy types for which respondents were most likely to always check food lists provided by allergy support groups(s)37 were: sesame seeds (33%); tree nuts (29%); and fish (29%).



69

The results shown in Table 6.3g are for buying same brand of product(s) shown from past experience to be allergen free. Table 6.3g Methods of managing the allergy - buying same brand of

product(s) shown from past experience to be allergen free Q16 As the person who mainly buys the groceries, how often do you do the following things to



TOTAL SAMPLE Yes

(a) No (b)


% % %

Always 62 b66 58

Often 32 30 34

Occasionally 2 1 3

Never 3 2 4

Don't know / not answered 1 1 2

TOTAL 100 100 101* ab Indicates categories where there was a significant difference between the results in each column

(significance at the 95% confidence level) * Does not add to 100% due to rounding. Two thirds (62%) of respondents always buy the same brands as in the past, with a third (32%) often buying the same brands as in the past. Very few did not do this, with only 3% stating they never did this. As seen consistently in this section, members of an allergy support group were significantly more likely than non-members to always buy the same brands as in the past (66% versus 58%)38. Those with 'other allergies'39 were most likely to follow past experience when purchasing products, with 76% always buying the same brands of products. The next most likely to do this were those with the following allergies40: wheat (73%); sulphites (72%); sesame seeds (71%); milk (71%); and soy (70%).

38 Not shown in the table. 39 The 'other allergies' category included those who claimed allergies to other food items such as

specific fruit and vegetables; other grains; colourings; flavourings; meats; etc. 40 Not shown in the table.


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Those least likely to rely on past experience were respondents with peanut (62%) and egg allergies (63%) in their household. The results shown in Table 6.3h are for checking food lists provided by the MFD. Note that this question was asked only of New Zealand respondents since it was only applicable to them; thus, analysis is of the New Zealand sample only. Table 6.3h Methods of managing the allergy - checking food lists provided by

the Manufactured Food Database Q16 As the person who mainly buys the groceries, how often do you do the following things to



TOTAL NEW ZEALAND SAMPLE Yes

(a) No (b)

BASE: ALL RESPONDENTS (n) (n=97) 65 32

% % %

Always 27 b37 6

Often 18 b25 3

Occasionally 21 22 a19

Never 26 12 a53

Don't know 3 2 6

Not answered 6 3 a12

TOTAL 101* 101* 100 ab Indicates categories where there was a significant difference between the results in each column

(significance at the 95% confidence level) * Does not add to 100% due to rounding. Forty five percent of New Zealand respondents either always or often check food lists provided by the MFD, with a quarter never checking food lists provided by MFD. A significant difference in the behaviour of members and non-members of allergy support groups was seen. Members were significantly more likely to check food lists provided by MFD (62% versus 9% always / often). It is possible that the higher level of not answered scores to this question amongst non-members could indicate that there was a lack of awareness about the existence of the MFD41. This question did not investigate respondents' reasons for using / checking the MFD.

41 Very few people in the New Zealand sample were not formally diagnosed by a medical

practitioner or dietitian (i.e. 3%), so the reason they are not aware is not due to self-diagnosis. This suggests that the information may not be readily made available.


71

When looking at the different allergies, some respondents were more likely to check food lists provided by MFD than others42. The three allergies that prompted respondents to always check food lists provided by MFD were: milk (32%); wheat (32%); and other allergies (30%).

6.4. Approach to broad product categories in screening for substances of concern (Q17) Respondents were asked if there were any broad product categories, e.g. sweet biscuits or frozen foods etc, for which they always needed to read the labels because the majority of them contained the substances of concern. The results are shown in Table 6.4a. Table 6.4a The need to check broad product categories Q17a Are there any broad product categories (eg dairy foods, bread, etc) for which you particularly need

to read labels because the majority of them are likely to cause problems for the person(s) with the allergy / allergies?

TOTAL SAMPLE

BASE: ALL RESPONDENTS (n) (n=510)

%

Yes, I have to check some product categories 56

No, I have to check all product categories 41

Don’t know / can’t recall / not applicable 3

TOTAL 100

Two in five respondents (41%) said they had to check all product categories and over half (56%) had to check some product categories. This was reported most by those with sesame (56%), soy (56%) or milk (53%) allergies in their household, and least by those with shellfish (43%), peanut (44%), tree nut (45%) or sulphite (45%) allergies43,44. Those shopping for children were more likely to report this than those shopping for themselves (44% versus 22% respectively)45.

42 Not shown in the table. 43 Not shown in the table. 44 Again, the fact that many households have more than one allergy present means that the results

for individual allergens have been affected. 45 Not shown in the table.


72

Respondents who said they needed to check some product categories were given a list of 37 categories. They were then asked to indicate which of these categories they checked and the results are listed in Table 6.4b in descending order. Table 6.4b Broad product categories that need to be checked Q17b If yes, please tick which of the following broad product categories you check for that reason

TOTAL TOTAL BASE: THOSE WHO CHECK BROAD PRODUCT

CATEGORIES (n) (n=285)

BASE: THOSE WHO CHECK BROAD

PRODUCT CATEGORIES (n) (n=285)

% % Sweet biscuits 87 Soups 42 Breakfast cereals 86 Noodles 39 Savoury biscuits / crackers 85 Dairy products 38 Cakes / muffins / pastries 85 Pasta 37 Confectionery 83 Margarines 36 Savoury snack foods 82 Dried fruit 36 Chocolates 77 Vegetable oils 33 Desserts 73 Butter / dairy spreads 32 Muesli 67 Egg and egg products 32 Spreads 67 Fish and fish products 31 Pre-prepared meals 64 Baby foods 27 Ice cream 62 Smoked / cured meats 26 Cook / simmer / pasta sauces 60 Infant formula 12 Sauces (eg. chilli, BBQ, Worcestershire) 58 Fruit juices 12

Canned foods 56 Soft drinks 10 Breads 53 Cordials 10 Frozen foods 52 Alcoholic drinks 6 Sausages 48 Rice 5 Mayonnaises 44

Notably, many of the items at the top of the list are non-essential food items for the household, such as biscuits, cakes, confectionery and snack foods. By allergen46, there were three for which respondents were significantly more likely to check all product categories : sesame seeds (56%); soy (56%); and milk (53%).

46 Not shown in table.


73

7 THE USE OF FOOD LABELS TO MANAGE THE ALLERGY

7.1. General use of food labels (Q22) Respondents were presented with a series of statements about selecting foods using food labels and asked to indicate the degree to which they agreed or disagreed with each statement. The statements and the results are shown in Table 7.1a. Table 7.1a Attitudes towards food labels Q22 Here are a number of things people have said about selecting food products. Please tell me how

strongly you agree or disagree with each statement.

I’m very

interested in food label

information

Some information on labels is really useful

Hard to tell advertising

and standard

information apart

It’s easy to understand and use the

label information

I’ve always been able to

find information I

need on labels

I just focus on one or two key things

I don’t have enough time

when shopping to

read the labels

BASE: ALL

RESPONDENTS

(n)

(n=510) (n=510) (n=510) (n=510) (n=510) (n=510) (n=510)

% % % % % % %

Strongly agree 75 38 9 4 4 3 2

Tend to agree 18 51 30 37 32 17 4

Neither agree nor disagree 4 8 23 16 10 7 9

Tend to disagree 1 2 28 29 36 24 27

Strongly disagree 1 1 8 13 18 48 56

Note: columns do not add to 100% as those who said 'don't know' are not shown. New Zealanders were significantly more likely than Australians to disagree (either strongly or tend to) with two statements in particular47: It’s hard to tell which parts of the label are advertising and which are

standard information manufacturers have to put on (44% versus 34% respectively); and

I’ve always been able to find any information I need on a food or drink label (63% versus 51% respectively).

47 Results not shown in the table.


74

Respondents who were members of an allergy support group were significantly more likely than those who were non-members to disagree (either strongly or tend to) with the following attitudinal statements48: I’ve always been able to find any information I need on a food or drink label

(65% versus 40% respectively); When I read the labels I just focus on one or two key things (81% versus

62% respectively); It’s easy to understand and use the information on food labels (53% versus

30% respectively); and I don’t have time to read food labels when I’m shopping even if I wanted to

(87% versus 80% respectively). For one statement, the reverse was true, with members of allergy support groups significantly more likely than non-members to agree (either strongly or tend to) with49: I find some information on food labels really useful or important (92%

versus 86% respectively). This question was first asked in a general consumer research that was conducted in 200250, and thus in Table 7.1b, the results for this current allergen survey are compared to the results attained for the total sample51 in the previous research.

48 Results not shown in the table. 49 Results not shown in the table. 50 Food Standards Australia New Zealand (FSANZ). 2003, Food Labelling Issues: Quantitative

Research with Consumers, NFO Donovan Research report, FSANZ, Canberra. 51 The consumer survey did contain a sub-set of those with special health needs relating to

allergens and / or asthma, however the results are not strictly comparable because the definition of 'allergy' for inclusion in the allergy sub-set in the consumer survey was broader than for the allergen survey.


75

Table 7.1b Attitudes towards food labels, Allergen Labelling Survey 2003 versus General Consumer Labelling Survey 2002 Q22 Here are a number of things people have said about selecting food products. Please tell me how strongly you agree or disagree with each statement.

I’m very interested in food label information

Some information on labels is really useful

Hard to tell advertising and standard

information apart

It’s easy to understand and use the label

information

I’ve always been able to find information I need

on labels I just focus on one or

two key things I don’t have enough

time when shopping to read the labels

Allergens Consumers* Allergens Consumers* Allergens Consumers* Allergens Consumers* Allergens Consumers* Allergens Consumers* Allergens Consumers*


(n=510) (n=1940) (n=510) (n=1940) (n=510) (n=1940) (n=510) (n=1940) (n=510) (n=1940) (n=510) (n=1940) (n=510) (n=1940)

% % % % % % % % % % % % % %

Strongly agree 75 32 38 23 9 12 4 10 4 7 3 15 2 7

Tend to agree 18 37 51 54 30 35 37 43 32 37 17 49 4 24

Neither agree nor disagree

4 17 8 15 23 21 16 17 10 15 7 15 9 18

Tend to disagree

1 10 2 6 28 26 29 23 36 32 24 16 27 36

Strongly disagree

1 4 1 1 8 5 13 7 18 9 48 5 56 15

* SOURCE: FSANZ (2003) Food Standards Australia New Zealand (FSANZ). 2003, Food Labelling Issues: Quantitative Research with Consumers, NFO Donovan Research report, FSANZ, Canberra.

Note: columns do not add to 100% as those who said 'don't know' are not shown.


76

Although many variances were evident, the three major areas of divergence between the two sample groups were: a significantly greater number of allergen survey participants were inclined to

strongly agree that they were very interested in food label information (75% versus 32% respectively); and

significantly more allergen survey participants were inclined to strongly disagree that they: − just focus on one or two key things (48% versus 5% respectively); and − don't have enough time when shopping to read the labels (56% versus

15% respectively) (FSANZ 2003). The differences seen indicate that those using labels to avoid allergens take a great interest in food labels and read them thoroughly through necessity, even though it is time consuming.

7.2. How often food labels are used in the selection of packaged foods (Q23) Respondents were asked how often they looked at the information on food labels when buying a product. Results are shown in Table 7.2a. Table 7.2a How often food labels are looked at Q23 When buying packaged foods in general, how often do you look at the food labels? PLEASE TICK

ONE BOX ONLY

MEMBERSHIP OF

ALLERGY SUPPORT GROUP

TOTAL SAMPLE Yes

(a) No (b)


% % %

Only when I buy a product for the first time 16 b6 a27

Only occasionally when I buy a product 4 2 5

Most of the times I buy a product 32 34 31

Every time I buy a product 47 b58 a36

Not answered <1 <1 <1

TOTAL 99* 100 99* ab Indicates categories where there was a significant difference between the results in each column

(significance at the 95% confidence level) * Does not add to 100% due to rounding.


77

Almost half of respondents (47%) said they check the labels every time they buy a product, while one in six (16%) only checked when they buy the product for the first time. Again there was a difference in the degree to which labels were checked, by membership of a support group, with significantly more members than non-members saying they check every time they buy a product (58% versus 36% respectively). Non-members were significantly more likely than members to say they check only when they buy the product for the first time (27% versus 6% respectively). The results attained in the general consumer research that was conducted in 200252 for the two label items that were of particular importance to those with food allergies: i.e. the ingredients list and the allergen declaration53, are shown in Table 7.2b for reference54. Table 7.2b How often food labels are looked at Q When buying packaged foods in general, how often do you look at …(name of label element)? ONE

RESPONSE ONLY

CONSUMER SURVEY

Ingredients list

Allergen declaration

BASE: ALL RESPONDENTS (n) (n=1277) (n=235)

% %

Only when I buy a product for the first time 31 23

Only occasionally when I buy a product 18 20

Most of the times I buy a product 32 28

Every time I buy a product 20 30

TOTAL 101* 101* * Does not add to 100% due to rounding. The proportion of respondents in the general consumer labelling survey who checked the labels every time they buy a product was much less than in the allergen labelling survey. This could be expected, since avoidance of allergens is a serious issue for those with food allergies.

52 Food Standards Australia New Zealand (FSANZ). 2003, Food Labelling Issues: Quantitative

Research with Consumers, NFO Donovan Research report, FSANZ, Canberra. 53 The results for other label elements are reported in the original source document. 54 It should be noted that strictly speaking, the two surveys are not comparable because in the

allergen survey the question was asked about 'food labels' in general whereas the general consumer survey investigated individual label elements. Further, it is not feasible to compare the results from allergy sufferers in the general consumer survey to the allergen survey results because the sample size for the former is very small for the most relevant label element, the allergen declaration [n=29], and the definition of 'allergy' for inclusion in the allergy sub-set in the consumer survey was broader than for the allergen survey.


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7.3. How trustworthy labels are perceived to be (Q24) Respondents were asked how much they believe they can trust the information that is given on food labels. Results are shown in Table 7.3a. Table 7.3a How trustworthy food labels are perceived to be Q24 How much do you feel you can trust the information that is given on food labels? PLEASE TICK

ONE BOX ONLY

TOTAL SAMPLE

MEMBERSHIP OF ALLERGY SUPPORT

GROUP

Yes (a)

No (b)


% % %

I completely trust what the labels say 4 2 5

I’m pretty sure I can trust what the labels say 57 b51 a63

I’m not sure whether to trust the labels or not 39 b47 a31

Can’t say / don’t know 1 0 1

TOTAL 101* 100 100 ab Indicates categories where there was a significant difference between the results in each column

(significance at the 95% confidence level) * Does not add to 100% due to rounding. Just over half of respondents (57%) said they were pretty sure they can trust what the labels say, while two in five (39%) said they were not sure whether to trust the labels or not. Again, there was a difference in the degree to which labels were trusted, by membership of a support group. Significantly more members than non-members said they were not sure whether to trust the labels or not (47% versus 31% respectively). The non-members were significantly more likely than members to say they were pretty sure they can trust what the labels say (63% versus 51% respectively).


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The results attained in a general consumer labelling survey that was conducted in 200255 for this question56 in relation to two label elements, ingredients lists and allergen declarations, are shown in Table 7.3b. Table 7.3b How trustworthy food labels are perceived to be Q How much do you feel you can trust the information that is given on food labels? PLEASE TICK

ONE BOX ONLY

CONSUMER SURVEY57

Ingredients list

Allergen declaration

BASE: ALL RESPONDENTS (n) (n=1277) (n=235)

% %

I completely trust what the labels say 29 37

I’m pretty sure I can trust what the labels say 54 53

I’m not sure whether to trust the labels or not 17 10

TOTAL 100 100 ab Indicates categories where there was a significant difference between the results in each column

(significance at the 95% confidence level) * Does not add to 100% due to rounding. For both the label elements measured in the consumer labelling research, the levels of confidence were significantly higher than was recorded for the more general question relating to 'food labels' in the allergen labelling survey. This suggests that many of those with allergies have experienced some difficulty with the labelling of ingredients contributing to their lower level of trust.


Research with Consumers, NFO Donovan Research report, FSANZ, Canberra. 56 The results for other label elements are reported in the original source document. 57 Although the consumer survey also included a sub-sample of respondents with special needs (ie.

allergy or asthma) the two sets of results are not strictly comparable because respondents in the consumer survey identified themselves as being afflicted with an allergy and the definition of allergy used was much broader in that survey than was used in the allergen survey.


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7.4. How often unsure about food label information (Q25) Respondents were asked how often they feel unsure about particular ingredients or foods when reading the labels with regards to concerns about the presence of potential allergens. Results are shown in Table 7.4. Table 7.4 How often unsure about food items or ingredients on labels Q25 In general, when reading food labels because of concerns about allergens, how often are you

unsure about food items or particular ingredients? PLEASE TICK ONE BOX ONLY

MEMBERSHIP OF

ALLERGY SUPPORT GROUP

TOTAL SAMPLE

Yes (a)

No (b)


% % % Always unsure 6 7 5

Often unsure 26 b34 17

Sometimes unsure 66 b57 a74

Never unsure 2 2 2

Don’t know 1 0 2

TOTAL 101* 100 100 ab Indicates categories where there was a significant difference between the results in each column

(significance at the 95% confidence level) * Does not add to 100% due to rounding. Very few respondents said they were never unsure about food items or ingredients on labels (2%) with regards to concerns about the presence of potential allergens. Two thirds said they were sometimes unsure (66%) and a quarter (26%) said they were often unsure. There was a difference in the degree of uncertainty by whether the respondent was a member of a support group; with significantly more members than non-members saying they were often unsure (34% versus 17% respectively). Non-members were significantly more likely than members to say they were sometimes unsure (74% versus 57% respectively).


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7.5. Action taken when unsure of an ingredient or a product label (Q26) Respondents were then asked what they did if they were unsure about what was written in the ingredient list of a food label. The results are shown in Table 7.5 below. Table 7.5 Action taken when unsure of an ingredient Q26 If you are unsure about what is written in the ingredient list, which of the following do you do?

PLEASE TICK ALL BOXES THAT APPLY


TOTAL SAMPLE Yes

(a) No (b)

BASE: THOSE UNSURE ABOUT INGREDIENTS IN

FOOD LABELS BECAUSE OF ALLERGENS (n) (n=495) (n=253) (n=238)

%* %* %*

Avoid using / eating the food 88 90 86

Ring the manufacturer and ask 46 b64 29 Try a small amount / give a small amount to the person with the allergy 17 14 a20

Ring your dietitian or doctor 7 7 7

Ring a support group 5 b9 0

Ring a friend 4 5 3 Eat the food anyway / give the food to the person with the allergy 1 0 1


* Adds to more than 100% due to multiple responses. Avoidance of the food was the most common action if the respondent was unsure of an ingredient on a food label, with nine in ten (88%) saying this. The next most common response was to ring the manufacturer, which almost half (46%), indicated they would do. Members of allergy support groups were significantly more likely to contact the manufacturer than non-members (64% versus 29% respectively), and to contact an allergy support group (9% members versus 0% non-members respectively). Non-members of an allergy support group were significantly more likely to trial the food by trying a small amount or giving a small amount to the person with the food allergy than were members of support groups (20% versus 14% respectively).


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7.6. Attitudes towards and utility of disclaimers (Q27, Q28, Q29) Respondents were asked about their attitudes to the series of disclaimers currently appearing on food labels: ‘may contain traces of …’; ‘made in the same premises as products containing …’; and ‘made on the same equipment as products containing …’.

The response options given were: not very useful because it doesn’t say whether the ingredient I am allergic to is

definitely in the product or not; quite useful because it reminds me I may be eating a product containing the

ingredient I am allergic to; very useful because I am told that there is a chance that the ingredient I am

allergic to is present; and not sure / don’t know.

Results for each disclaimer are shown in Table 7.6a. Table 7.6a Attitude to disclaimers … Q27/28/29 If you had an allergy to the particular ingredient mentioned, how useful is this statement to you?

PLEASE TICK ONE BOX ONLY

May contain traces of …

Made in the same

premises as products

containing …

Made on the same

equipment as products

containing …


% % % Not very useful 54 54 37

Quite useful 11 13 14

Very useful 33 31 46

Not sure /don’t know <1 1 3

Not answered 1 <1 0

TOTAL 99* 99* 100 * Does not add to 100% due to rounding.


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The first two disclaimers: ‘may contain traces of …’, and ‘made in the same premises as products containing …’ were each seen by over half (54%) of the respondents as not very useful. The third statement, ‘made on the same equipment as products containing …’ was seen by respondents more as being very useful (46%). It was reported in a general consumer labelling survey that was conducted in 200258 that a large proportion of consumers (53%) said that the 'may contain nuts' statement would be very useful – for those with an allergy to nuts. However, fewer consumers with an allergy in the general survey said this statement was very useful (42% of those with a peanut allergy). In comparison, this survey recorded a lower proportion of respondents saying the 'may contain …' disclaimer was very useful (33%). However, it should be noted that the general consumer survey was asking about nuts in particular whereas, in the allergen survey, the question was worded more generally (see question 27a). Members of an allergy support group were significantly more likely than non-members to say that the disclaimers were useful: ‘may contain traces of …’ (37% versus 29% respectively); ‘made in the same premises as products containing …’ (35% versus 27%

respectively); and ‘made on the same equipment as products containing …’ (55% versus 38%

respectively)59. Respondents were then asked what action they would take if they saw that a label displayed one of these disclaimers. Results for each disclaimer are shown in Table 7.6b. Table 7.6b Attitude to disclaimers … Q27/28/29 What would you do if a label on a product said …? PLEASE TICK ONE BOX ONLY

May contain traces of …

Made in the same

premises as products

containing …

Made on the same

equipment as products

containing …

BASE: ALL RESPONDENTS (n) (n=510) (n=510) (n=510) % % % Always avoid 51 41 66 Sometimes / usually avoid 40 43 25

Always use 8 10 3

Not sure/ don’t know 1 6 5

TOTAL 100 100 99* * Does not add to 100% due to rounding.


Research with Consumers, NFO Donovan Research report, FSANZ, Canberra. 59 Not shown in table.


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For the first two disclaimers: ‘may contain traces of …’ and ‘made in the same premises as products containing …’ - the same proportion of respondents said they usually or sometimes avoid the product (40% and 43% respectively). However, a half (51%) said they would always avoid the product with the may contain traces of …’ statement. Of note, two-thirds (66%) respondents said they would always avoid the product with the statement ‘made on the same equipment as products containing …’ on the label. Members of an allergy support group60 were significantly more likely than non-members to say they would always avoid the product when the label contained a statement to the effect: ‘may contain traces of …’ (61% versus 41% respectively); ‘made in the same premises as products containing …’ (48% versus 35%

respectively); and ‘made on the same equipment as products containing …’ (78% versus 53%

respectively).

7.7. Overall ability to recognise substances of concern (Q14, Q30) A composite measure of knowledge was constructed, which was a combination of the answers at both Q14 (alternative words for substances) and Q30 (simulated food labels – see section 7.8 for more detailed discussion). The total number of substances of concern for each of the food allergies was calculated, and then respondents' recognition of each of the substances was measured against this maximum score. Results are shown for each allergen in Table 7.7a, arranged in descending order of ability to recognise the substances of concern.

60 Not shown in table.


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Table 7.7a Ability to recognise substances of concern. Performance against maximum scores

ALLERGEN Tree nuts

(eg. cashews walnuts)

Milk Egg Soy Fish Sesame seeds

Wheat Peanuts (ground

nuts)

BASE: RESPONDENTS


THEIR HOUSEHOLD (n)

(n=279) (n=200) (n=272) (n=78) (n=83) (n=72) (n=66

) (n=399)

Maximum score 7.0 13.0 4.0 12.0 3.0 2.0 22.0 15.0

Average score for those managing the

allergy 5.2 9.2 2.8 6.4 1.5 1.0 9.1 6.0

Ratio of average: maximum scores as

a percentage 74% 71% 70% 53% 50% 50% 41% 40%

This number is a count of the number of substances of concern at Q14 and Q30 for this allergy type. Note that sulphites did not feature on the simulated labels, so no calculation is included for sulphites. Averages are rounded to one decimal place. As can be seen, tree nuts, milk and egg allergens were the easiest to identify, with between seven in ten (70%) and three quarters (74%) of the substances of concern being identified by those with the allergy. Around half of the substances of concern for those with a soy, fish or sesame allergy in their household were correctly identified (53%, 50% and 50% respectively). However, only two in five of the possible substances of concern for those with wheat or peanut allergies in their household (41% and 40%) were identified61. The levels of identification evident suggest that many people with food allergies did not recognise all products containing the particular substances that could trigger an adverse reaction. Results are shown for all allergens by whether the respondent was a member of an allergy support group in Table 7.7b.

61 For peanut allergies, the substance vegetable oil is included in the calculation for the maximum

score. It is noted that this is only an issue for very severe allergies, and hence the average score for this measure is probably an underestimation.


86

Table 7.7b Ratio of ability to recognise substances of concern, by membership of allergy support group

ALLERGEN Tree

nuts (eg. cashews walnuts)

Milk Egg Soy Fish Sesame seeds

Wheat Peanuts (ground

nuts)

BASE: RESPONDENTS


THEIR HOUSEHOLD (n)

(n=279) (n=200) (n=272) (n=78) (n=83) (n=72) (n=66) (n=399)

Members of an allergy support group

▲80% ▲77% ▲75% 56% 50% 50% 43% ▲47%

Not members of an allergy support group

67% 65% 62% 52% 47% 50% 40% 32%

▲ Indicates significance to the line below, i.e. not members of an allergy support group. Note that sulphites did not feature on the simulated labels, so no calculation is included for sulphites. Averages are rounded to one decimal place. As indicated by the table above, being a member of a support group means that respondents were significantly more likely to identify substances of concern for the following allergies: tree nuts; milk; egg; and peanuts.

Respondents' capacity to recognise the individual food substances of concern listed on the labels is discussed in the following section.


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7.8. Ability to recognise substances of concern on actual food labels (Q30) Respondents were presented with 14 simulated food labels to test their ability to recognise suitable products for their household. The labels are displayed in Figure 7.8. Figure 7.8 Food labels (Q30)

LABEL 4: MAYONNAISE Ingredients

SUGAR, VINEGAR, VEGETABLE OIL, THICKENER(1422), SALT, EGG, MUSTARD, VEGETABLE GUM(415), MILK SOLIDS NON-FAT, COLOURS (101,160A), ANTIOXIDANT (320), WATER ADDED.

LABEL 5: SPREAD Ingredients

SUGAR, VEGETABLE OILS, HAZELNUTS, SKIM MILKPOWDER, LOW FAT COCOA, EMULSIFIER, WATERADDED.

LABEL 6: SOY MILK Ingredients

WATER, SOY PROTEIN ISOLATE, SUNFLOWER OIL,MALTODEXTRIN, SUGAR, MINERAL SALTS (339, 340,509, 529), FOOD ACIDS (332, 338), VITAMINS(VITAMINS A, B2, B12).

LABEL 3: CHEESE Ingredients

Soy extract, vegetable oils, casein, sea salt,mineral salt (339), food acid, flavour, colour(annatto, tumeric), water added.

LABEL 2: RYE BREAD Ingredients

UNBLEACHED BAKER’S FLOUR, YEAST, RYE MEAL,RYE FLOUR, VEGETABLE OILS, SALT, GLUTEN,VINEGAR, SOYA FLOUR, SEMOLINA, EMULSIFIERS(471, 481), VITAMIN (THIAMIN), WATER ADDED.

LABEL 1: BREAD Ingredients

UNBLEACHED BAKER’S FLOUR, YEAST, SALT,VEGETABLE OILS, SOYA FLOUR, EMULSIFIERS(481, 472e), PRESERVATIVE (282), VITAMIN(THIAMIN), WATER ADDED. NO ARTIFICIALFLAVOURS.

LABEL 7: MARGARINE Ingredients

Sunflower oil, vegetable oils, water, salt, milksolids, emulsifiers (471), natural food acid,preservative (202), natural colours, vitamins(a, d), flavour.

LABEL 8: DRINK Ingredients

SUGAR, MALTODEXTRIN, COCOA, WHEYPOWDER, BARLEY AND MALT EXTRACT,MINERALS (CALCIUM PHOSPHATE, IRONPYROPHOSPATE), VITAMINS (A, B1, B2, D3,NIACIN). ALL NATURAL INGREDIENTS, NOARTIFICIAL COLOURS OR FLAVOURS.

LABEL 9: MARZIPAN Ingredients

Sugar, almonds, glucose syrup, glucose.

LABEL 11: SAUCE Ingredients

WATER, SUGAR, REHYDRATED VEGETABLES,PEANUT BUTTER, RECONSTITUTED LEMON JUICE,DESSICATED COCONUT, HYDROLYSED VEGETABLEPROTEIN, FOOD ACID (260), SALT, SPICES, SOYSAUCE, EMULSIFIER, VEGETABLE GUMS.

LABEL 12: MUESLI BAR Ingredients

Oats, glucose syrup, sugar, fruit, vegetable oil, puffedcereal, rolled wheat, humectant, roasted almonds,honey, desiccated coconut, skim milk powder, naturalemulsifier, flavour, food acid, natural colour. Maycontain traces of peanuts and other nuts.

LABEL 13: CONFECTIONERY Ingredients

SUGAR, FULL CREAM MILK POWDER, COCOABUTTER, COCOA MASS, EMULSIFIERS (322, 476),FLAVOURING. MAY CONTAIN TRACES OF NUTS,EGG OR SEED.

LABEL 10: SAUCE Ingredients

VINEGAR, MOLASSES, SUGAR, SALT, ANCHOVIES,TAMARINDS, SHALLOTS, GARLIC, SPICES,FLAVOURINGS, WATER ADDED.

LABEL 14: PIE / PASTIE Ingredients

Wheat flour, water, chicken, vegetables (corn, peas,carrot), reconstituted onion, shortening, food acid(330), flavour, antioxidant (306), colour (160a),thickener (1422), textured soy protein, salt, garlic,flavours, hydrolysed vegetable protein, rice flour,mineral salts (341, 451), sugar, chilli, ginger, raisingagent (500), herbs, preservative (281), spices,vegetable powders, yeast extract, emulsifier (481),maltodextrin, dextrose, flavour enhancer (635), acid(330), vegetable gums (415, 412), colour (160b).


88

Note that many respondents had multiple allergies in their household and accordingly, the presence of multiple allergies may result in the rejection of a particular product based on potential reactions to allergens other than the one for which results are shown. Thus, in the following tables (7.8a-h) the percentage of respondents who highlighted the substances of concern is shown. However, some did not 'correctly' identify the substance of concern to their household, but rejected the product. This suggests that respondents may have been rejecting products for reasons other than the food allergy being discussed.

Results are shown in the series of tables that follow. Table 7.8a below, displays the answers for those with a tree nut allergy in their household. Table 7.8a Awareness of substances of concern for those with a tree nut

allergy Q30 Circle any ingredients you think might be unsuitable for any person(s) in your household with

an allergy? PLEASE TICK ALL THAT APPLY. Then indicate your assessment of the product.

% of those with tree nut allergy in household who ….

BASE: THOSE WITH A TREE NUT ALLERGY WHO RESPONDED (n)

Identified substance

Would reject the product

Label # Ingredient Label 5 [n=269] Hazelnuts 91 99% Reject

Spread Highlighted entire label / product 5 1% Suitable

Label 9 [n=264] Almonds 92 98% Reject Marzipan Highlighted entire label / product 8 1% Suitable

Label 12 [n=278]

'May contain traces of peanuts and other nuts'

76 99% Reject

Roasted almonds 85 1% Suitable Muesli bar Highlighted entire label / product 6

Label 13 [n=256]

'May contain' 84 93% Reject

Confectionery Highlighted entire label / product 3 3% Suitable 4% Don't know


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Awareness was high amongst those with a tree nut allergy, with almost all correctly recognising the substance of concern. Results suggest that levels of awareness were higher where there was a direct reference to 'nuts' in the ingredient list, rather than the 'may contain' statements, as indicated by the results for Labels 5 and 9. However, it could also be the case that the 'may contain' statement acts as a default, as was indicated by the results for Label 13 where the only reference to nuts was in the 'may contain' statement. Between 3% to 8% of respondents highlighted the product type as being unsuitable rather than highlighting a particular ingredient in the product. Amongst those with a tree nut allergy, high levels of rejection of the products were recorded (93% to 99%). Table 7.8b displays the answers for those with a milk allergy in their household.


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Table 7.8b Awareness of substances of concern for those with milk allergy % of those with milk allergy in

household who …. BASE: THOSE WITH A MILK ALLERGY WHO RESPONDED (n)



Label # Label 3 [n=181] Casein 79 97% Reject

Cheese Highlighted entire label / product 7 2% Suitable 2% Don't know

Label 4 [n=198] Milk solids non-fat 86 100% Reject Mayonnaise Highlighted entire label / product 6

Label 5 [n=198] Skim milk powder 86 98% Reject Spread Highlighted entire label / product 6 2% Suitable

Label 7 [n=195] Milk solids 88 95% Reject Margarine Highlighted entire label / product 6 4% Suitable

1% Don't know

Label 8 [n=176] Whey powder 88 95% Reject Drink Highlighted entire label / product 6 2% Suitable

3% Don't know

Label 12 [n=200]

Skim milk powder 86 100% Reject

Muesli bar Highlighted entire label / product 6

Label 13 [n=198]

Full cream milk powder 87 100% Reject

Confectionery Highlighted entire label / product 6

Label 14 [n=162]

Shortening 39 93% Reject

Pie/pastie Highlighted entire label / product 10 2% Suitable 5% Don't know

Awareness was generally high for those with a milk allergy, with 86-88% correctly identifying the substances of concern (milk solids, full/skim milk powder, etc). Awareness for casein [Label 3] was slightly lower with 79% identifying that substance, however, only two in five (39%) identified shortening [Label 14] as a source of potential reaction. There was a slightly higher proportion of respondents (10%) who highlighted Label 14 product type as the cause of concern.


91

In terms of respondents' assessments of the products, very high levels of rejection were indicated. Even in the case of Label 14, where correct identification of the substance of concern was low, 93% of respondents with a milk allergy in the household still said they would reject the product. It is probable therefore, that in households where there were multiple allergies, some of these products had been rejected for reasons other than their potential to cause a reaction amongst those with a milk allergy. It is possible that respondents were aware that there was potential for those types of products to contain other allergens. Table 7.8c shows the answers for those with an egg allergy in their household. Table 7.8c Awareness of substances of concern for those with an egg allergy Q30 Circle any ingredients you think might be unsuitable for any person(s) in your household with

an allergy? PLEASE TICK ALL THAT APPLY

% of those with an egg allergy in household who ….

BASE: THOSE WITH AN EGG ALLERGY WHO RESPONDED (n)



Label # Ingredient Label 4 [n=265] Egg 90 98% Reject

Mayonnaise Highlighted entire label / product 5 1% Suitable 1% Don't know

Label 13 [n=261]

'May contain' statement 80 95% Reject


Where the substance was included as part of the ingredients, identification was higher (i.e. 90% identified egg in Label 4 compared to 80% who highlighted the 'may contain' statement in Label 13). Similar percentages highlighted the product type as the cause of concern for both products (5% and 6% respectively). The level of overall rejection of the product was high (95%), even where there was a lower level of acknowledgment that the product could contain the allergen (Label 13).


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The answers for those with a fish allergy in their household are shown in Table 7.8d. Table 7.8d Awareness of substances of concern for those with a fish allergy

% of those with fish allergy in household who ….

BASE: THOSE WITH A FISH ALLERGY WHO RESPONDED (n)



Label # Ingredient Label 10 [n=74] Anchovies 78 96% Reject

Sauce Highlighted entire label / product 12 1% Suitable 3% Don't know

One in ten (12%) of the respondents highlighted the product type as the cause of concern, and 78% correctly identified that anchovies was a substance of concern for those with a fish allergy. Ninety six percent of the respondents then rejected the product, with a further 3% saying they did not know whether the product was suitable.


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The answers for respondents with a soy allergy in their household are shown in Table 7.8e. Table 7.8e Awareness of substances of concern for those with soy allergies

% of those with soy allergy in household who ….

BASE: THOSE WITH A SOY ALLERGY WHO RESPONDED (n)



Label # Ingredient Label 1 [n=67] Soya flour 86 82% Reject

Bread Highlighted entire label / product 1 6% Suitable 10% Don't know

Label 2 [n=70] Soya flour 86 83% Reject Rye bread Highlighted entire label / product 4 6% Suitable

11% Don't know

Label 3 [n=73] Soy extract 89 96% Reject Cheese Highlighted entire label / product 7 3% Suitable

1% Don't know

Label 6 [n=68] Soy protein isolate 90 93% Reject Soy milk Highlighted entire label / product 9 4% Suitable

3% Don't know

Label 11 [n=77] Hydrolysed vegetable protein 44 99% Reject Sauce Soy sauce 73 1% Don't know

Highlighted entire label / product 6

Label 14 [n=71] Hydrolysed vegetable protein 45 84% Reject Pie/pastie Textured soy protein 75 3% Suitable

Highlighted entire label / product 6 11% Don't know

Levels of recognition of the substances of concern were higher where the allergen was clearly stated (i.e. the word ‘soy’ or ‘soya’ was part of the ingredient name), with between 73% and 90% respondents correctly identifying the substances of concern. Where the substance of concern was also part of the product name as in Label 6, i.e. soy milk, recognition was total (99%). Recognition was lower where substances that could be problematic were not clearly designated as containing the allergen, i.e. hydrolysed vegetable protein, where less than half of respondents identified this substance as being a potential issue (44% for Label 11 and 45% for Label 14). Up to 9% highlighted the product type as the cause of concern.


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In terms of each product's perceived suitability, around four in five went on to reject each of the bakery or pastry items (82% - 84%), whereas almost all rejected the cheese, soy milk and sauce. Table 7.8f displays the answers for respondents with a sesame allergy in their household. Table 7.8f Awareness of substances of concern for those with a sesame

seed allergy % of those with sesame seed allergy

in household who …. BASE: THOSE WITH A SESAME ALLERGY WHO RESPONDED (n)



Label # Ingredient Label 13 [n=68] 'May contain' statement 81 93% Reject


Four in five (81%) of those who answered correctly identified this confectionery product as having the potential to cause an allergic reaction, based on the 'may contain' statement. A further 7% highlighted the product type as a cause of concern. Ninety three percent respondents then went on to reject the product, whereas 4% indicated it was suitable for those with a sesame seed allergy. A further 3% said they did not know whether it was suitable.


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Table 7.8g contains the answers for those with a wheat allergy in their household. Table 7.8g Awareness of substances of concern for those with a wheat

allergy % of those with wheat allergy in

household who …. BASE: THOSE WITH A WHEAT ALLERGY WHO RESPONDED (n)



Label # Ingredient Label 1 [n=56] Unbleached baker's flour 88 93% Reject

Bread Highlighted entire label / product 2 4% Suitable 4% Don't know

Label 2 [n=57] Unbleached baker's flour 84 95% Reject Rye bread Semolina 51 2% Suitable


Label 4 [n=60] Thickener (1422) 43 95% Reject Mayonnaise Highlighted entire label / product 5 3% Don't know

Label 6 [n=38] Maltodextrin 45 87% Reject Soy milk Highlighted entire label / product 8 3% Suitable

8% Don't know

Label 8 [n=50] Maltodextrin 32 92% Reject Drink Highlighted entire label / product 6 8% Don't know

Label 11 [n=63] Hydrolysed vegetable protein 36 95% Reject Sauce Highlighted entire label / product 6 5% Don't know

Label 12 [n=66] Puffed cereal 52 98% Reject Muesli bar Rolled wheat 71 2% No response


Label 14 [n=64] Hydrolysed vegetable protein 31 95% Reject Pie/pastie Wheat flour 80 5% Don't know



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Where the substance of concern formed part of the ingredient (i.e. rolled wheat, wheat flour, or unbleached baker's flour), levels of recognition were higher (80-88%) than where a level of knowledge about possible derivation (e.g. hydrolysed vegetable protein or maltodextrin62) or composition (e.g. semolina) was assumed. Thus, only around a third (36% [Label 11] and 31% [Label 14]) identified hydrolysed vegetable protein as a cause for concern; and similarly maltodextrin recorded somewhat lower levels of awareness (45% [Label 6] and 32% [Label 8]). Thickener 1422 (acetylated distarch adipate) was also less likely to be recognised, with less than half of respondents (43%) identifying it as a potential source of concern. However, high levels of rejection were still shown, indicating that some products had been rejected on the basis that other allergens were present. Table 7.8h contains the answers for those with a peanut allergy in their household.

62 Maltodextrin is most frequently derived from maize, but can also be derived from wheat.


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Table 7.8h Awareness of substances of concern for those with a peanut allergy

% of those with peanut allergy in household who ….

BASE: THOSE WITH A PEANUT ALLERGY WHO RESPONDED (n)



Label # Ingredient

Label 1 [n=178] Vegetable oil 43 70% Reject

Bread Highlighted entire label / product 4 10% Suitable

17% Don't know


Rye bread Highlighted entire label / product 6 13% Suitable

16% Don't know


Cheese Highlighted entire label / product 8 8% Suitable

9% Don't know


Mayonnaise Highlighted entire label / product 6 4% Suitable

5% Don't know


Spread Hazelnuts 88 3% Suitable



Margarine Highlighted entire label / product 7 10% Suitable

8% Don't know

Label 9 [n=354] Almonds 92 96% Reject

Marzipan Highlighted entire label / product 8 3% Suitable

1% Don't know

Label 11 [n=386]

Peanut butter 93 99% Reject

Sauce Highlighted entire label / product 6 1% Suitable

Label 12 [n=394]

Vegetable oil 18 99% Reject

Muesli bar Almonds 78 1% Suitable

'May contain' statement 79 1% Don't know


Label 13 [n=370]

'May contain' statement 84 93% Reject

Confectionery Highlighted entire label / product 8 3% Suitable

3% Don't know


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Again, where the substance of concern was explicitly stated, greater level of awareness were recorded. For example, all the nut (peanuts and tree nuts) ingredients showed high levels of recognition (78% to 93%). Awareness of the 'may contain' statement for the product with no other ingredient of concern listed was also high (84% [Label 13]). However, awareness of vegetable oil as a source of potential concern for those with an allergy to peanuts was low with less than half highlighting this substance throughout (18% - 48%). This result suggests that there might be a lack of knowledge about the problems that could be caused by this ingredient (see notes for table 5.1a). The finding supports the hypothesis that where the respondent was a member of an allergy support group, levels of awareness were significantly higher for vegetable oils63. Additionally, Standard 1.2.4 of the Code states that if the source of vegetable oils is peanuts, soybean or sesame, then the source must be declared on the food label (FSANZ 20021). Therefore, the scores for vegetable oil may be low because vegetable oil may only be an issue for those with severe peanut allergies. Summary From the composite measure that was constructed from responses to both the food ingredients question (Q14) and the food labels question (Q30) combined, the levels of identification achieved suggest that many people with food allergies did not recognise all of the substances that could trigger a serious reaction. It was found that those with tree nut, milk or egg allergies were most accurate in their assessment of ingredients and / or labels, whilst those with peanuts and wheat allergies were the least accurate (see section 7.7). For both of these two groups, there were particular issues of knowledge or recognition, for example vegetable oils and praline (possible peanut derivation); and maltodextrin (mostly maize derived but some from wheat) and textured vegetable protein (mostly contains soy but wheat derivation is also possible).



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8 OTHER LABELLING ISSUES

8.1. Labelling issues of concern (Q31) Respondents were first asked whether there were any labelling issues that were of particular concern to them in selecting different food products for the person with the allergy, and then given the opportunity to comment in a spontaneous manner (Q31). Their responses were then coded and the results are presented in section 8.1.1. Following this, respondents were then presented with a list of comments about labels and asked to indicate how often each of them happens when they are assessing the suitability of a food product (Q32). Results for this prompted measure are presented in section 8.1.2. 8.1.1. Spontaneous (Q31) Two thirds of respondents (66%) said there were labelling issues that had caused them concern in attempting to identify foods that are suitable for the person(s) with the food allergies; more likely for those who belonged to a support group (76% versus 55% who did not). Those respondents who did say they were concerned about labelling issues were then asked to describe what these were. Results are shown in Table 8.1.1.


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Table 8.1.1 Issues with food labels (spontaneous) Q31b What problems do you encounter when trying to identify foods that are suitable for the person(s)

with an allergy?

COUNTRY

TOTAL

Australia (a)

New Zealand

(b) BASE: THOSE WHO SAID THEY HAD AN ISSUE (n) (n=336) (n=272) (n=64) %* %* %* Do not understand what is meant by some things 19 18 25 Code numbers are meaningless 13 b11 a23 What ingredient is derived from 12 13 11 Many names for same thing 12 12 9 'May contain' not clear as doesn't indicate the risk level 10 11 6 Unlabelled ingredients 10 9 14 Non-specific terms such as 'vegetable oil' 10 11 8 Location of information non-standard 9 9 6 'May contain' overused 9 b11 a0 The terms 'flavours' and 'spices' not explicit enough 7 b4 a20 Writing illegible / too small 7 7 8 Imported products have different labelling laws 7 7 8 'May contain' cuts down on number of suitable foods 5 6 2 Percentage labelling would indicate level of risk 4 4 6 'Made in same premises' is confusing 4 5 3 Prepared items not labelled (restaurants, takeaway) 4 4 6 Previously safe products now labelled 'may contain' 4 4 3 'Emulsifier' confusing 4 4 5 Manufacturers are avoiding responsibility 3 4 0 Ingredients change constantly 3 b2 a6


* Exceeds 100% due to multiple responses. The issues that appear to be of most concern were under the following themes: lack of understanding on the part of the consumer about specific things on

food labels, such as emulsifiers and code numbers (food additives); the use of 'may contain' statements whereby respondents said the statements

were not clear or were overused, and their use unnecessarily restricted food choices for those with allergies;

the derivation of various ingredients such as 'vegetable' oil, and the use of the terms 'flavours' and 'spices';

manufacturers issues that included unlabelled ingredients or changes to ingredients without notice, and also the issue of manufacturers avoiding the responsibility for labelling what is in their products; and


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labelling issues including the varied location of information on labels. The desire for percentage labelling and the belief that imported products are not subject to the same labelling laws as Australian / New Zealand produced items. It should be noted however, that imported foods in Australia and New Zealand are required to conform to the food labelling standards contained in the Code.

8.1.2. Prompted (Q32) The results of the prompted measure are shown in Table 8.1.2. Table 8.1.2 Problems encountered with labels

Product used many

times safely

suddenly lists

ingredient

Different names on

label for the ingredients

I need to avoid

Sometimes 'spices' and

'natural flavours'

include the ingredient I

need to avoid

Reaction to product

that did not have

problem ingredient

listed

Different sized

packages of the same

product have

different ingredients

listed

Outside label varies

from individual

inside labels

Ingredient is in

product but not listed on label

Product inside is

different to what label

says


(n=510) (n=510) (n=510) (n=510) (n=510) (n=510) (n=510) (n=510)

% % % % % % % %

Often happens 31 25 18 7 7 4 2 1

Sometimes happens

38 39 24 30 24 19 18 8

Seldom happens

12 12 12 14 15 21 23 26

Never happens 13 12 23 41 30 33 47 56

Don't know 4 10 21 7 22 21 8 8

Not answered 1 2 2 1 2 2 2 1

The boxes indicate the combined results reported in the text below. Several of the issues relating to food labels were experienced often or sometimes by around two thirds of respondents. These were: a product that has been used safely many times, suddenly has the

ingredient of concern listed (69%); and

there are different names on the label for the ingredients that need to be avoided (64%).


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Three issues were experienced often or sometimes by around a third of respondents: 'spices' or 'natural flavours' sometimes include the ingredient that needs to

be avoided (42%);

there was a reaction to the product even when it did not have the potential allergen listed in the ingredient list (37%); and

different sized packages of the same product have different ingredients listed (31%).

Around one in five experience the following events often or sometimes: the outside label on a product differs from what is on individual inside

labels (23%); and

the ingredient is in the product but not listed on the label (20%).

8.2. Any changes observed to the way allergens are listed on food labels (Q33) In order to facilitate the measurement in the follow-up survey of changes brought about by the allergen labelling requirements in Australia and New Zealand contained in the Code, a question was asked about changes that may have been observed to labels. Almost two thirds (63%) of respondents said they had noticed some changes in the previous 12 months, with no variation by country. Respondents who belonged to support groups were significantly more likely than those who did not, to have noticed change (82% versus 44% respectively). Respondents were then asked what changes they had noticed. This was an open-ended question. Results are shown in Table 8.2.


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Table 8.2 Changes seen to labels Q33b What sorts of things have you noticed?

COUNTRY

TOTAL Australia

(a) New

Zealand (b)

BASE: THOSE WHO SAID THEY HAD SEEN A CHANGE TO LABELS (n) (n=323) (n=257) (n=66)

%* %* %* 'May contain' now appears on everything 45 44 47 Bold print for allergens 23 b20 a33 A lot more information now included 14 b20 a33 All/more/most products have warnings about nuts 14 b16 a6 Made on same product line / equipment [currently used] 12 b14 a3 Blanket statements eg ‘contains dairy/seeds/eggs…’ 9 b11 a0 'Made in the same factory …' [currently used] 5 6 2 'Made in the same premises …' [currently used] 5 5 4 More products are labelled / clearly labelled 5 b3 a14 Source of ingredients now listed 5 5 3 SUBTOTAL OF THOSE CURRENTLY USED 16 b18 a6


* Exceeds 100% due to multiple responses. Almost half of respondents (45%) indicated that they were aware of increasing use of the 'may contain' disclaimer. A quarter (23%) mentioned the bold type for allergens, however, this comment was more likely to be made by New Zealand respondents than Australians (33% versus 20% respectively). New Zealanders were also significantly more likely than Australians to have noticed that a lot more information is now included (33% versus 20% respectively), and that more products are now labelled or more clearly labelled (14% versus 3% respectively). On the other hand, Australians were significantly more likely than New Zealanders to say that they had noticed: all or more products had warnings about nuts (16% versus 6% respectively); the use of the 'made on the same product line or equipment' statement (14%

versus 3% respectively); and the use of blanket statements about other allergens such as dairy, seeds, eggs,

etc, not just nuts (11% versus 0%). As shown in the sub-total, 16% nominated measures that are part of the Code – 18% of Australians and 6% of New Zealanders.


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8.3. Suggested improvements to food labels (Q34) Finally, respondents were asked whether they had any suggestions about how food labels might be improved to indicate the presence of allergens. Results are shown in Table 8.3. Table 8.3 Suggested improvements to food labels Q34 Are there any other things you'd like to see on food labels? Do you have any suggestions about

how food labels can be improved to make it easier for you to both find products that contain the problem ingredient or locate products that do not contain that ingredient?

COUNTRY

TOTAL

SAMPLE

Australia (a)

New Zealand

(b) BASE: ALL RESPONDENTS (n) (n=510) (n=413) (n=97) %* %* %* Should use plain English 12 12 14

Need more detail about meaning of things 7 6 9

Should say what ingredient is derived from 5 5 5

Different words for same thing / should be uniform 5 b6 a1

'Flavours', 'spices', 'colours' not explicit enough 4 b3 a9

Additive Code numbers are meaningless 4 4 6

Need to know what type of ‘nuts’ 4 b4 a0

'Dairy' has lots of other names (casein, whey, etc) 4 3 4

Need to know the source of vegetable oil 3 3 3

SUBTOTAL1: Clarity or understanding 42 b40 a52 Should be bold print or larger writing on labels 16 b14 a23

Warning statement should be located near ingredient list 5 b4 a11

Location of label information should be standard 3 b2 a6

Comments about format of ingredients list 3 3 4

SUBTOTAL1: Formatting 27 b23 a44 Should say 'No nut / Nut free' 11 b12 a4

Should say egg-free, dairy-free 6 b4 a16

Symbols for 'free' or safe products 6 6 3

SUBTOTAL1: Should say when substance not present 23 23 23


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Table 8.3 Suggested improvements to food labels (continued)

COUNTRY

TOTAL

SAMPLE

Australia (a)

New Zealand

(b) BASE: ALL RESPONDENTS (n) (n=510) (n=413) (n=97) %* %* %* Should say does or does not contain, not 'may' 11 11 8

Manufacturers using 'may contain' to cover themselves 5 b6 a1

The words 'may contain' increasingly overused 4 4 2

Should substantiate 'may contain' statements 3 4 1

SUBTOTAL1: 'May contain' statements 22 b25 a12 All % should be listed (to ascertain level of ingredient in food and therefore assess risk) 5 6 2

All ingredients should be listed 4 4 6

SUBTOTAL1: Accuracy 9 10 8 ab Indicates categories where there was a significant difference between the results in each column (significance at

the 95% confidence level) * Exceeds 100% due to multiple responses. 1 The subtotal is a count of respondents, not responses, i.e. respondents may have given more than one

response in the category, and hence the sub-total is not the sum of all responses shown. From the results, it seemed that food labelling was a salient issue for the respondents in this survey, as indicated by the number of responses recorded. Major issues for respondents were those of clarity or understanding of the information on food labels: should use plain English; need more detail about meaning of things; 'dairy' has lots of other names (casein, whey, etc); 'flavours', 'spices', 'colours' not explicit enough; code (additives) numbers are meaningless; lots of different words for the same thing. Naming of ingredients should be

uniform; need to know the source of ‘vegetable oil’; should say what an ingredient is derived from; and need to know what type of ‘nuts’.

In total, 42% of respondents made comments relating to these issues and the level recorded in the New Zealand sample were significantly higher than in the Australian sample (52% versus 40% respectively).


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Another major concern was the 'may contain' statements, with many comments made in relation to this: manufacturers should substantiate 'may contain' statements; they should say does or does not contain, and not 'may contain'; the 'may contain' statement is overused; and manufacturers are covering themselves legally.

When specific answers were combined, a total of 22% made a comment about the 'may contain' statements. Significantly more Australian respondents commented on the ‘may contain’ statements than the New Zealand respondents (25% versus 12% respectively). And related to this, some respondents preferred products being labelled to indicate when the substance of concern was not present rather than that it 'may be' present: should say 'No nut’ or ‘Nut free'; should say ‘egg-free’, or ‘dairy-free’; and use symbols for 'free' or ‘safe’ products.

In total, 23% respondents said products should be labelled to indicate when the substance of concern is not present, and the proportions who said this were similar in both countries. The accuracy of labelling information was also a concern: all [ingredient] percentages should be listed (to ascertain level of ingredient in

food and therefore assess risk); and all ingredients should be listed.

In this regard, one in ten (10%) respondents raised labelling information accuracy as an issue, to a similar degree in both New Zealand and Australia. It has been noted throughout the report that many of these potential problems have been addressed in the Code, for example in standard 1.2.3 for the listing of components of compound ingredients and standard 1.2.4 for specifying the source of cereals, starch, fats and oils. However, at the time of this survey, foods were still available for sale that had been labelled according to the old regulations, due to stock-in-trade provisions that were in force after December 2002. Various formatting issues were also suggested for improvement: should use bold print or larger writing (font size) on labels; warning statements should be located near ingredient list; location of label information should be standard; and comments about format of ingredients list.

Twenty seven percent of respondents mentioned formatting issues, and again New Zealanders were more likely to mention this than Australians (44% versus 23% respectively).


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9 LIMITATIONS There were some limitations to this current survey and these are summarised below. The sample was obtained from three sources: two official sources – hospitals or medical institutions and private clinicians - and the third source, support groups. The three sample groups were tightly controlled in order to ensure that each formed a similar proportion of the sample. Thus where deficiencies of recruiting points developed in one source, attempts were made to redistribute the questionnaires across others within that segment rather than shifting them to another source. Official sources (hospitals or medical institutions) Because of confidentiality issues, a database of allergy sufferers from which to recruit participants could not be compiled. The researchers therefore divided the sampling across multiple recruiters. This methodology was designed with the dual purpose of maximising representativeness (having a large number of collection points to ensure that any one centre could not unduly influence the findings) and minimising the onerousness for recruiters who were participating (making procedures quick and instructions easy to follow). To ensure that the selection of eligible participants remained consistent across all recruiters, a set of recruitment criteria were developed for the use of 'official' sources (see Appendix D). This specified the following:

From your records, can you please identify [p#] clients who are ‘at risk’ of anaphylactic reactions to certain foods or food ingredients and who are currently over 1 year of age. Please select clients who have been seen at the clinic in the past 2 years.

We want to include a broad cross-section of the population who are ‘at risk’ of anaphylactic reactions to food or food ingredients, so that we can assess the effectiveness of labelling for all types of allergies. Please select clients to roughlyrepresent the proportion of each food allergy typically seen at your clinic.

Thus, if for example a third of the clients seen at your clinic have an egg allergy, then that proportion of the total number of questionnaires you have been asked to send outshould be sent to clients with an egg allergy. Clients should be selected at randomfrom your client records for the previous 2 years. If a client has more than one allergy that may cause anaphylaxis, they should be included as part of the sample for theleast common allergy seen at your clinic.


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However, since the sampling was through different medical institutions and private clinicians, the final selection of respondents may not have conformed to the recruitment criteria. The answers respondents gave to question 10 (i.e. Approximately how long ago was the food allergy first identified for the person with the most serious food allergy?) indicate that there were a large number of persons in the survey who had been diagnosed more than two years previously, which was contrary to what was specified in the recruitment criteria64. This could be explained by a number of hypotheses: 1. that recruiters may not have sampled strictly according to the criteria provided or

lacked the capacity to do so; 2. that many of the respondents selected had had their allergy identified previously i.e.

the recruiter was not the identifying practitioner; or 3. in many cases, the person with the most serious food allergy was not the person in

the household who was selected for participation by the recruiter. It is impossible to ascertain the degree to which the first two might have contributed to this anomaly. However, in up to 22% of households other serious food allergies were present65. It is probable that in some cases, the person with the most serious food allergy was not the person in the household who was selected for participation by the recruiter. As no control was maintained over the sampling, it may not have been drawn in a uniform fashion and thus, there could be variations in the way participants were selected. In addition, recruiters were instructed to recruit across the broad spectrum of their clients in proportion to their food allergies. This was to ensure that a selection of allergies were included, and not just peanut allergies, which were anticipated to be the largest proportion of all clients. This perhaps may have led to over and/or under representation of some allergies depending on the food allergies predominantly seen by each official source. As official recruiters from Western Australia could not be engaged, the sample was not as widespread as intended at the outset. Also, the Northern Territory was not included, and the South Island of New Zealand was under-represented, both due to difficulties in locating suitable recruiters. The structure of the final sample versus population is covered in section 3.1.

64 Seventy three percent of the sample from hospitals or medical institutions had been diagnosed

more than two years previously, as had 61% of those recruited by private clinicians. Seventy eight percent of support group participants had also been diagnosed for more than 2 years.

65 Question 2: How many people in your household have a serious food allergy? 78% of households have only one person with a serious food allergy and the remainder (22%) have more than one.


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As the questionnaire packs distributed were in English and most of the respondents indicated that English was the language spoken at home, households where a language other than English was spoken may have been under-represented in this survey. The questionnaire asked respondents some retrospective questions, such as when the allergy was first diagnosed. This may have led to recall bias, where the respondent may not have accurately remembered the past. Furthermore, some respondents may have perceived some questions as being intrusive of their medical condition and either not answered the question or provided a response that they deemed acceptable. In these instances, a response bias may have occurred. The questionnaire also asked questions of specific allergens, for example ‘wheat’ rather than ‘all cereals containing gluten’. Therefore, responses provided have been for specific allergens rather that the categories as stipulated in standard 1.2.3 of the Code. These measurement biases may have led to over or under estimation of certain responses. Support groups In addition to the above, support groups were also used to locate eligible respondents, initially via advertisements in which the selection criteria were outlined and the FREECALL phone number listed. Following this, top-up amounts were mailed-out to random members66. Accordingly, a proportion of participants from the support group sample were self-selecting67. Future surveys It should be noted that in order to maintain comparability, the methodology needs to remain consistent between each wave of the survey. This would ensure that any differences that are observed relate to actual or real changes rather than to changes due to methodological alterations. Because of this, it is recommended that any repeat survey be kept as closely as possible to the way this survey was conducted. Response rates The response rates are discussed in some detail in section 2.5. Whilst it is important to keep the basic proportions of the sample equivalent across the three sample sub-groups, the survey process could be made easier by attaining more 'in principle' support from the official sources (i.e. hospitals and private clinicians) and relevant ethics committee approvals prior to repeating the survey. This will make the process of recruitment more streamlined and less labour intensive.

66 N=40 additional questionnaires were sent in New Zealand and n=132 in Australia. 67 N=47 Australian and n=7 New Zealand consumers requested a questionnaire via the FREECALL

number, thus 31% of the support group sample were self-selecting.


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10 CONCLUSIONS AND RECOMMENDATIONS To reiterate, the objectives of the research were to: assess the level of awareness and knowledge of consumers ‘at risk’ of an

adverse reaction, and their carers (if relevant), of the labelling provisions that cover allergens;

assess the ability of those ‘at risk’ (if relevant) or their carers to successfully identify those foods that contain the pertinent allergens;

understand the existing behaviours of ‘at risk’ consumers (where relevant) or their carers in regard to food selection; and

identify whether a lack of understanding of the allergen labelling of foods contributes to the occurrence of adverse reaction in those affected, and to what degree.

The results are therefore discussed in terms of each of these objectives.

10.1. Level of awareness and knowledge of consumers about labelling provisions that cover allergens ➲ Respondents used food labels extensively in managing the allergies in

their household and noticed that there had been changes to the way allergens were listed on food labels. Ninety percent of respondents said they always read food labels carefully (see section 6.3). Based on responses to question 33 about any changes that have been observed to the way allergens are listed on food labels (see section 8.2), it was apparent that around two thirds (63%) of respondents had already noticed some specific changes in the form of: greater use of 'may contain' statements; the use of bold print for allergens within the ingredient list (significantly

more in New Zealand than in Australia); more warnings about nuts (significantly more in Australia than New

Zealand); the use of 'made on same product line or equipment' statement

(significantly more in Australia than New Zealand); the use of blanket statements such as 'contains dairy / seeds / nuts …'

(significantly more in Australia than New Zealand); and greater use of 'made in same factory' or 'same premises' statements.

The following sections cover issues related to the ability to identify allergens.


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10.2. Ability to successfully identify manufactured foods that contain allergens ➲ Respondents' ability to identify food products that contain particular

allergens of concern varied. This survey found that levels of awareness or ability to identify foods that contain allergens varied considerably and depended to a large degree on the type of food allergy the person had to deal with and the terms used for the substances of concern. This assessment was based on responses to both Q14 (see section 5.1) that collected information about respondents' ability to recognise the allergen from a selection of substances and ingredient names as well as Q30 (see section 7.8), which presented simulated labels. From a composite measure that was constructed from responses to both the food ingredients question (Q14) and the food labels question (Q30) combined, the levels of identification achieved suggest that many people with food allergies did not recognise all of the substances that could trigger a serious reaction. From this composite measure it was found that those with tree nut, milk or egg allergies were most accurate in their assessment of ingredients and / or labels, whilst those with peanuts and wheat allergies were the least accurate (see section 7.7). For both of these two groups, there were particular issues of knowledge or recognition, for example vegetable oils and praline (possible peanut derivation), maltodextrin (mostly maize derived but some from wheat), and textured vegetable protein (mostly contains soy but wheat derivation is also possible).

10.3. Existing behaviours of main grocery buyers in regard to food selection

➲ Respondents had adopted strategies to manage food selection.

Two in five respondents (41%) said they had to check all product categories to make sure they avoid the substances of concern (see section 6.4). The major ways in which respondents managed food allergies in their household were by: reading food labels carefully (90% always did this); buying the same brand that past experience has shown to be allergen

free (62% always do this); never buying loose or bulk foods (43% never did this); buying food in sealed packages (29% always; 44% often did this); and checking food lists provided by an allergy support group (26% always; 24%

often did this).


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A quarter of New Zealand respondents (27%) said they always checked the MFD (see section 6.3). Most respondents with peanut (80%), tree nut (72%), shellfish (72%) or fish (62%) allergies never eat the substance knowingly. In contrast, those with sulphite (48%), soy (32%), or wheat (24%) allergies said they try but cannot avoid the substance completely (see section 6.2).

10.4. The labelling of foods and its impact on the occurrence of adverse / allergic reaction

➲ Food labelling did have some impact on the occurrence of a severe

allergic reaction. Two in five (42%) respondents said that the person with the most serious allergy had had a severe allergic reaction since their allergy had first been identified (see section 6.1). Amongst these, the major causes were that they had accidentally consumed (36%) or had come into contact with (21%) the substance of concern. Manufactured food labels were explicitly said to have contributed to some instances by: unlabelled or incorrectly labelled food (14%); and traces of substances in unexpected products (6%).

Eight percent identified pre-prepared food as an issue for their household. There was no significant difference by membership of a support group. Labels were seen by most (57%) to be relatively trustworthy, with a large proportion (39%) who did not know whether to trust the labels or not (see section 7.3). Respondents who were members of a support group were more likely to say they were not sure whether to trust the labels or not. Two thirds of respondents (66%) said they were sometimes unsure about food items or particular ingredients, a further quarter (26%) said they were often unsure and 6% said they were always unsure. Only 2% said they were never unsure. Respondents who were members of an allergy support group were more likely to be uncertain of food items and/or particular ingredients (see section 7.4). Respondents showed a preference for the disclaimer 'made on the same equipment as products containing …’, with 46% saying this statement was very useful (compared to 33% for 'may contain traces of …', and 31% for 'made in the same premises as products containing …'). However, over a third (37%) still said that the 'made on the same equipment ..' statement was not very useful (See section 7.6).


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Respondents indicated that the labelling issues that caused them particular concern (section 8.1.1, question 31) in their efforts to identify suitable foods for the allergy, were: their own lack of understanding about what some of the ingredients actually

were, due to the complex or unclear terms used i.e. identifying things like 'emulsifiers' etc as a potential source of concern;

the use of 'may contain' statements – over-used or not clear, and restricted the choice of foods that were available;

where some ingredients were derived from – the sources of certain vegetable oils, for example, were often not stated;

issues that were the responsibility of manufacturers, such as unlabelled ingredients or changes to the ingredients in products; and

issues relating to the food label, such as the location of the information or the perceived difference in labelling requirements for imported foods.

10.5. Clarity and understanding It was apparent that there are two key aspects to ensuring that food labels are effective as a means of preventing or minimising allergic reactions, namely: clarity; and understanding.

Clarity is the aspect that the food regulators and ultimately food manufacturers could consider. This involves things such as assisting those with food allergies to easily identify the substances that are of concern through: adopting more meaningful or accurate labelling or ‘advisory' statements. In

relation to the advisory statements, there was a preference for the statement: 'made on the same equipment as products containing …' (46% of respondents said this was very useful) but there was also a strong request for statements that stated when allergens were not present, e.g. 'allergen-free' claims (23% of respondents spontaneously requested this);

ensuring that the origin of particular ingredients, such as emulsifiers, vegetable oil, thickeners, etc, are shown so that potential allergens were able to be identified;

using uniform wording in plain English for allergens (5% of respondents said uniform words should be used and 12% said terms should be in plain English). Thus, always using egg instead of ovalbumin; milk instead of casein; etc;

using percentage labelling for allergens (5% of respondents) to indicate the level of the ingredient in the food to enable an assessment of risk (see discussion below on level of risk); and


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formatting issues, such as printing the allergen in bold or making the writing

larger (16% of respondents), and standardising the location of warning statements (5% said these should be near the ingredient list, and 3% said their position should be standard).

It would appear from the results in general, that a particular issue of concern for those managing a food allergy in their household was their ability to make an informed assessment of the level of risk. Thus, the disclaimers 'may contain traces of …', and 'made in same premises as …' were seen as largely not very useful. These statements did not give any indication of the likelihood of the allergen actually being present. 'Made on the same equipment as …' was seen as a better statement, because it indicated that there was a greater likelihood than for the other two, of the allergen being present, however it was still not seen as the ideal. As this is the Benchmark survey, and changes are currently being made to food labels under the allergen labelling provisions of the Code. Some of these factors may be addressed and therefore, reactions and changes to awareness and opinions would be expected to be seen when the follow-up survey is conducted. The second factor, understanding, was clearly an issue for consumers who are dealing with food allergies. While ‘understanding’ is a difficult concept to measure, in this survey it was assessed by respondents’ ability to use food labels to select appropriate foods, including the ability to identify different names for the substance of concern to them. The results of this survey indicated that understanding the information on food labels plays a role in consumers’ ability to use food labels appropriately when selecting foods for allergy sufferers. Clarity and understanding of food labelling information is not an issue confined to consumers shopping for the sub-population ‘at risk’ of food allergic reactions. The two key issues identified in this survey, clarity and understanding, are similar to the findings of ‘Quantitative research with consumers on food labelling issues’, a survey undertaken with the general population. That survey also indicated that consumers in Australia and New Zealand had difficulties using labelling information effectively to make informed food choices (FSANZ 2003).


115

10.6. Recommendations

The Quantitative Consumer Survey on Allergen Labelling has found that the utilisation of an allergy support group assisted greatly in improving the consumers' ability to identify the foods that were not suitable, and consequently to avoid foods that might otherwise trigger adverse or allergic reactions. It is probable therefore, that increased education occurs through support group affiliations. Hence, medical / health professionals who treat clients with severe food allergies may find that their clients could derive some additional benefit from joining such groups. This survey indicated that respondents who were diagnosed or being treated by private clinicians or allergy specialists were significantly less likely to receive formal instructions on how to identify ingredients of concern on food labels. Thus, additional information sources directed at people shopping to avoid certain allergens, could be beneficial. Medical practitioners could be used as the intermediaries for distribution of such educational materials. It was also apparent that those whose allergy had been diagnosed within the last 12 months had found it easier to get the information they need to help them avoid the foods of concern (see section 5.3). This could indicate that the information that is currently being provided after diagnosis might be more comprehensive or that changes to food labels themselves might already be contributing to increased ease of use. Since this survey was not conducted prior to changes to the Code, it was not possible to ascertain the level of impact that label changes have already had. It is recommended that as part of future evaluation activity a replicate survey be conducted in two to three years time, using the same methodology. Such a survey would enable FSANZ to track whether the allergen labelling provisions of the Code are meeting the desired objective of providing adequate information in relation to food, to enable consumers to make informed choices. If a survey is not possible, an alternative approach should be considered.


116

11 REFERENCES AND BACKGROUND INFORMATION Al-Muhsen S, Clarke A.E & Kagan R.S. 2003, ‘Peanut allergy: an overview’, Canadian Medical Association Journal, vol 168, no. 10, pp 1279-1285. Australian Bureau of Statistics (ABS). 1995, Occasional Paper: Recent Changes in Unpaid Work, [online]. Available: http://www.abs.gov.au/ausstats/[email protected]/0/E2D4A1C32FB888D8CA2568BA0019E941?Open&Highlight=0,women,grocery,household. [2004, January 28]. Australian Bureau of Statistics (ABS). 20011, Census of Population and Housing, Australian Social Trends, Population Distribution: Population Characteristics and Remoteness, ABS, Canberra. Australian Bureau of Statistics (ABS). 20012, Education and work Australia, Cat No 6227.0, ABS, Canberra. Australian Bureau of Statistics (ABS). 20013, Census of population and housing. Population distribution, Indigenous Australians, Cat No 4705.0, ABS, Canberra. Australia New Zealand Food Authority (ANZFA). 2001, The ANZFA Evaluation Strategy 2001 –2003, FSANZ, Canberra. Cohen D. 1999, Management of Children with Food-Induced Anaphylaxis (Thesis), Royal Prince Alfred Hospital, Sydney. Ewan P. W. 1993, 'ABC of allergies: anaphylaxis', BMJ, vol 316, pp. 1442-5. Food Standards Australia New Zealand (FSANZ). 2003, Food Labelling Issues: Quantitative Research with Consumers, NFO Donovan Research report, FSANZ, Canberra. Food Standards Australia New Zealand (FSANZ). 20021, The Australia New Zealand Food Standards Code, Anstat, Melbourne. Food Standards Australia New Zealand (FSANZ). 20022 , Request for Tender 2002/4: Quantitative Consumer Research on Allergen Labelling, [online]. Available: http://www.foodstandards.gov.au/_srcfiles/RFT_Allergy_labelling.pdf. [2002, June 10]. Halliday l, Thomsen J.A, Roberts L, Bowen S & Mead C. 2003, ‘Influenza vaccination of staff in aged care facilities in the ACT: how can we improve uptake of influenza vaccine?’ Australia and New Zealand Journal of Public Health, vol 2, no 1, pp 70-75.


117

Hill D.J, Hoskings C.S & Heine R.G. 1999, ‘Clinical spectrum of food allergy in children in Australia and South-East Asia: identification and targets for treatment’, Ann Med, vol 31, pp 272-281. Ivers R, Blows S, Norton R & Lo S.K. 2003, ‘Encouraging women to participate in reproductive research’, Australasian Epidemiologist, vol 10, no 2, pp 26-28. Jackson, W.F. 2003, Food Allergy, ILSI Press, Washington DC. Serna P, Bower C, Payne J, Miller M & Stanley F.J. 2003, ‘Web-based data collection: the DRIVE study’, Australasian Epidemiologist, vol 10, no 2, pp 23-25. Statistics New Zealand (SNZ). 20021, Sub-national population estimates, [online]. Available:http://www.stats.govt.nz/domino/external/pasfull/pasfull.nsf/0/4c2567ef00247c6acc256c6f006ff663/$FILE/alltabls.xls [2002, June 30]. Statistics New Zealand (SNZ). 20022, Sub-national population estimates, [online]. Available: http://www.stats.govt.nz/domino/external/pasfull/pasfull.nsf/0/4c2567ef00247 c6acc256c6f006ff663/$FILE/alltabls.xls [2002, June 30] Statistics New Zealand (SNZ). 20011, 2001 Census Snapshot 11 (Women), [online]. Available:http://www.stats.govt.nz/domino/external/pasfull/pasfull.nsf/WEB/Media+ Release+2001. [2004, January 28] Statistics New Zealand (SNZ). 20012, Census of Population and Dwellings: Population Structure and Internal Migration, SNZ, Wellington. Statistics New Zealand (SNZ). 20013, Census: Education 2001, SNZ, Wellington. Statistics New Zealand (SNZ). 20014, Census Snapshot 4 (Maori), SNZ, Wellington. Statistics New Zealand (SNZ). 20015, Census Snapshot 6 (Pacific peoples), SNZ, Wellington. Swain A, Soutter V & Loblay R. 1996, 'Food Allergy', Proceedings of the Nutrition Society of Australia, no 20, pp82-5. Although not referred to explicitly in the text, the following paper also assisted in informing the research design: Preeti J, Modifi S & Sicherer S. 2002, ‘Interpretation of commercial food ingredient labels by parents of food-allergic children’, Journal of Allergy Clinical Immunology, vol 108, no 8; pp. 1019-1021.

QUANTITATIVE CONSUMER RESEARCH ON ALLERGEN LABELLING – METHODOLOGY REPORT C02039

APPENDIX A METHODOLOGY REPORT

QUANTITATIVE CONSUMER SURVEY ON ALLERGEN LABELLING: BENCHMARK 2003

REPORT ON SURVEY DESIGN

Prepared by

Marketing and Communications Research Consultants

Preferred citation: Food Standards Australia New Zealand 2003. Quantitative

Consumer Survey on Allergen Labelling: Benchmark 2003 – Report on Survey Design. FSANZ. Canberra.

Job No.: C02039 Rhonda Zappelli B.App.Sci., B.A., QPMR Date: March 2003

QUANTITATIVE CONSUMER SURVEY ON ALLERGEN LABELLING: BENCHMARK 2003 C02039 – REPORT ON SURVEY DESIGN NFO DONOVAN RESEARCH

- i -

TABLE OF CONTENTS

1 BACKGROUND............................................................................................. 1 1.1. Introduction ....................................................................................................... 1 1.2. Research objectives ......................................................................................... 2 1.3. Target groups ................................................................................................... 2

2 SURVEY DESIGN.......................................................................................... 4 2.1. Overall survey design ....................................................................................... 4 2.2. Sample size ...................................................................................................... 5 2.3. Validity and reliability ........................................................................................ 9

3 FINDING PARTICIPANTS........................................................................... 10 3.1. Contact procedures ........................................................................................ 10 3.2. Criteria for selecting participants .................................................................... 11

4 DATA COLLECTION PROCEDURE ........................................................... 13 4.1. Distribution of questionnaires ......................................................................... 13 4.2. Delivery of distribution packs .......................................................................... 14 4.3. Data collection period ..................................................................................... 14 4.4. Support services for participants .................................................................... 15

5 ETHICS APPROVALS................................................................................. 16 5.1. Ethics applications submitted ......................................................................... 16 5.2. Clinician support for the ethics applications.................................................... 17

6 PRIVACY ISSUES ....................................................................................... 18 6.1. Distribution points ........................................................................................... 18 6.2. Participants who are patients.......................................................................... 18 6.3. All participants ................................................................................................ 19

7 THE QUESTIONNAIRE ............................................................................... 20 7.1. Development................................................................................................... 20 7.2. Pre-testing of instrument................................................................................. 20

7.2.1. Procedure............................................................................................ 20 7.2.2. Outcome.............................................................................................. 20

8 FIELD DOCUMENTATION.......................................................................... 24

9 REFERENCES AND BACKGROUND INFORMATION............................... 25

APPENDIX A: QUESTIONNAIRES (DOCUMENTS NOW ELSEWHERE IN APPENDICES) APPENDIX B: FIELD DOCUMENTS (DOCUMENTS NOW ELSEWHERE IN APPENDICES)

QUANTITATIVE CONSUMER RESEARCH ON ALLERGEN LABELLING C02039

1 BACKGROUND

1.1. Introduction

Anaphylactic reaction to allergens in food products is a serious health issue that affects around one percent of adults and less than ten percent of young children (FSANZ 2002). Such a reaction can occur as a result of exposure to substances such as: • Crustacea and their products; • Egg and egg products; • Fish and fish products; • Milk and milk products; • Nuts and sesame seeds and their products; and • Peanuts and soybeans and their products. The new Australia New Zealand Food Standards Code (the Code) was fully effective from 20 December 2002, and specifies three levels of advice for consumers: • Mandatory warning statements; • Mandatory advisory statements; and • Mandatory declarations of certain substances in food (allergen labels are an

example of this requirement) that apply when the sorts of particular ingredients defined above are present as: − an ingredient; − an ingredient of a compound ingredient; − a food additive or component of a food additive; or − a processing aid or a component of a processing aid.

The objective of the mandatory declarations, warning statements and advisory statements are to provide consumers with sufficient information such that they and / or their carers can avoid potentially life-threatening adverse reactions to food or an ingredient in food. Many food manufacturers have been in the process of bringing their food product labels into alignment with the new Code since it was first introduced in December 2000. Food Standards Australia New Zealand (FSANZ), through its established Evaluation Strategy 2001-03, is therefore in the process of assessing through this research, how well the regulatory arrangements of the Code are working in terms of the allergen labelling requirements (Standard 1.2.3). This research with consumers is to collect baseline data against which comparisons can later be made, in charting the effects of the introduction of the labelling changes for allergens on those ‘at risk’ of anaphylactic reaction to foods.


Research objectives The research aims outlined in the Request for Tender (RFT) were to: • Assess the level of awareness and knowledge of consumers ‘at risk’ of an

anaphylactic reaction and their carers (if relevant) of the labelling provisions that cover allergens;

• Assess the ability of those ‘at risk’ (if relevant) or their carers to successfully identify those foods that contain the pertinent allergens;

• Understand the existing behaviours of ‘at risk’ consumers (where relevant) or their carers in regard to food selection; and

• Identify whether a lack of understanding of the allergen labelling of foods contributes to the occurrence of anaphylactic reaction in those affected, and to what degree.

The evaluation described herein is the first part of what is intended to be a two-part process to measure the impact of the new labelling requirements. This first phase is described as the benchmark survey. The survey is therefore referred to throughout as the Quantitative Consumer Survey on Allergen Labelling: Benchmark 2003. It is planned to conduct a second phase of research at some time in the future to track changes in awareness, knowledge and behaviours when compared to the measures that are established by the benchmark survey based on the aims listed above.

This has an implication for the methodology selected in that it must be able to be replicated, a key requirement for ensuring reliability.

1.2. Target groups

The target groups for the proposed research were originally identified as: • those at risk of anaphylactic reaction to certain foods or food ingredients; and • their carers. Food-induced anaphylactic reaction was defined in the RFT as a ‘reaction that involves one or more of the following symptoms: difficulty breathing or throat swelling, generalised urticaria (hives) and/or faintness or collapse (FSANZ 2002). Originally, participants to be included in the research were those who have already had an anaphylactic reaction, or who have been identified as 'at risk' of food allergies by medical specialists, or their carers in those instances where the person is a child aged 14 or under.


However, during the development of the questionnaire, the defined target group was broadened to the following definition:

By serious food allergy we mean a reaction that involves one or more of the following symptoms due to exposure to a particular food or food ingredient:

difficulty breathing or throat swelling, swelling or itching of lips or tongue, hives, skin rashes or eczema, stomach cramps, vomiting or diarrhoea, or faintness or collapse

This broader definition was adopted in order to attain a wider cross-section of participants who may be assessing food labels critically, because of concerns about the presence of allergens, so it is not canvassing a truly anaphylactic population. It should be noted that this survey is not intended to measure the prevalence of food anaphylaxis in Australia and / or New Zealand. The questionnaire was eventually designed to be answered by the main grocery buyer, as it was deemed that they would be the most knowledgeable and appropriate person in the household to answer questions about food labels and food selection.

This report details the survey design and data collection procedures for the Quantitative Consumer Survey on Allergen Labelling: Benchmark 2003.


2 SURVEY DESIGN

2.1. Overall survey design

To address the requirements of the project in the most cost-efficient and appropriate manner possible whilst maximising the participation rate, a self-completion methodology was designed. The methodology adopted comprises three data collection avenues: • Medical institutions (clinics at hospitals); • Private specialists in private practice; and • Support groups. The first two of these avenues are expected to provide a more 'balanced' sample in that those who are invited to participate will be selected by allergy specialists/immunologists according to an established selection protocol. Participants attained via the allergy support groups will be self-selecting and hence are likely to have a particular interest in or concern with the topic through their own or a family member being affected. Each of these individual collection avenues is further discussed in sections 3 and 4, however the following note is made about a significant variation to the methodology as defined in the RFT documents: The prescribed methodology was based on getting personnel from medical clinics to administer questionnaires to patients. It was suggested by NFO Donovan Research that a more appropriate (less onerous) approach would be to pay medical institutions a nominal amount to distribute the questionnaires to selected patients. This was subsequently the methodology adopted, and that is what is described herein. The rationale for utilising this particular methodology (over the original one) was that: − It minimised the level of involvement, or burden, required by selected hospitals or

clinics with the aim of increasing their likelihood to participate; − It had the capacity to include a larger proportion of respondents who have been

aware of their own or their child's condition for a longer period, and hence have been exposed to labelling issues for a longer period;

− It minimised the potential muddying of data by having a relatively short data collection period;

− It preserved the privacy of respondents because the research agency does not come in contact with their contact details, and responses would be truly anonymous;

− It increased the randomness of the sample by reducing potential selection bias;


− It increased the representativeness of the sample by allowing more medical institutions across Australia and NZ to be included;

− It preserved quality standards; and − It was cost-effective in that the cost of getting the agency to mail out the

questionnaires is markedly reduced compared to having hospital personnel administer it (adjusted to compensate for non-responses with the preferred method).

A note on benchmarking Ideally benchmark data should have been obtained prior to any changes to food labelling regulations. As it is, the new Code was in the process of implementation from December 2000 to December 2002, and hence some manufacturers had made changes to their labels in line with the new Code prior to December 2002. The data collected therefore cannot be truly defined as 'benchmark', but are really a snapshot of the situation at the time of recording.

2.2. Sample size

Sample size is usually based on the level of sub-group analysis that is required. In this instance FSANZ indicated that they would not be seeking the provision of detailed sub-group analysis, and hence a total sample size of n=500 is the target. Of this total, n=400 questionnaires will be sought via 'official' sources such as medical institutions and specialists, and n=100 will be sought via support groups. The RFT specified that the data should deliver results to a 95% confidence level. Based on the projected population of probable anaphylactics1, a sample of n=4002 will allow for variations of 10% (+/- 5%). This means that there is a 95% probability (ie. 95% confidence) that the actual population percentage will not vary by any more than 5% in either direction from that recorded by the sample. The number to be distributed was calculated based on an estimated response rate of 50%. Mailing out n=1000 self-completion questionnaires (n=800 via official sources and n=200 via support groups), and achieving n=500 returns. The sample distribution is shown in Tables 2.2a – 2.2f.

1 Based on the incidence statistics provided by FSANZ in the RFT (FSANZ 2002). 2 The calculation is based solely on the proportion of the sample that is attained via 'official'

sources due to concerns about the representativeness of those who respond via support groups.


The calculations of sample size are based on the Australian and New Zealand population statistics shown in Table 2.2a. Table 2.2a Population characteristics for Australia and New Zealand Australia New Zealand Population (million) June 2000 19.2 3.8 0-14 years (%) June 2000 20.5 22.9 15-64 years (%) June 2000 67.2 65.3 65 years and over (%) June 2000 12.3 11.8 Sources: Australian Demographic Statistics, June 2000 (Cat. no. 3101.0); Statistics New Zealand, Demographic Trends, 2000, Wellington. To spread the sample required across Australia and New Zealand in the correct proportions, the total population of both countries must be considered. Based on these population figures and the prevalence rates provided in the RFT (FSANZ 2002), the proportions for the total sample required in each of the countries are shown in the following tables. Table 2.2b Preliminary calculations for sample proportions

PROJECTED ANAPHYLACTICS TOTAL Australia New Zealand Total population 23,000,000 19,200,000 3,800,000 0-14 years 4,770,000 3,900,000 870,000 5% of children aged 0-14 (10% of children aged up to 7)

238,500 195,000 43,500

15+ years 18,230,000 15,300,000 2,930,000 1% of those aged 15+ 182,300 153,000 29,300

Estimated anaphylactic population 420,800 348,000 72,800 Proportion of population by country 83% 17%

Of the total sample (n=500), 83% needs to be derived from Australia and 17% from New Zealand, as shown in Table 2.2c. Table 2.2c How the sample is to be divided between the two countries

(proportional) SAMPLE SOURCE TOTAL TO BE

ACHIEVED Australia New Zealand

% of total required 100% 83% 17% n n n Official sources (ie medical institutions, private clinicians)

400

332

68

Support groups 100 83 17

500 415 85


When the sample is drawn from each Country, State and Territory in the correct proportion, it is not possible to compare between locations because the sample size is insufficient. A minimum of n=100 per location is recommended for sub-group comparisons. Therefore, in order to enable some cross-country comparisons, albeit at a decreased level of confidence, it was suggested that the sample from 'official' sources be boosted for New Zealand. This involves shifting fifteen questionnaires from Australia to New Zealand, as shown in Table 2.2d. Table 2.2d Proposed boosted sample for New Zealand

SAMPLE SOURCE TOTAL TO BE ACHIEVED

Australia New Zealand

% of total required

100%

79% (adjusted)

21% (adjusted)

n n n Official sources (ie medical institutions, private clinicians)

400

332-15 =317

68+15 =83

Support groups 100 83 17

500 400 100 As shown above, this would mean that when the official and support group samples were combined, a total of n=100 responses would be obtained from New Zealand. To attain the specified sample, and based on an estimated response rate of 50%, the number of questionnaire packs mailed out must be doubled, and this is shown in Table 2.2e. Table 2.2e Calculations for 'boosted' sample from official sources

TOTAL Total sample

required

Total mail out

required

To be mailed out via medical institutions

To be mailed out via private clinicians

% n n n n TOTAL 100% 400 800 400 400

Australia 79% 317 634 317 317 New South Wales 28.0% 100 200 100 100 Victoria 20.6% 80 160 80 80 Queensland 15.4% 60 120 60 60 South Australia 6.5% 26 52 26 26 Western Australia 8.2% 33 66 33 33 Tasmania 2.0% 10 20 10 10 Northern Territory 0.8% NA NA NA NA Australian Capital Territory

1.3% 8 16 8 8

New Zealand 21% 83 166 83 83


It should be noted that the Northern Territory, although comprising 0.8% of the total sample, is not included in the figures, since it was not possible to locate any official organisations (or private clinicians) that were suitable to take part. Hence their allocations of questionnaires have been redistributed to Tasmania and Australian Capital Territory. Note: The final mail out sample size for each individual recruiter depends upon the number of collection points eventually arranged in each location (Country, State or Territory). The number of questionnaires to be obtained from support groups is shown in Table 2.2f. Table 2.2f Calculations for proportional sample from support groups

TOTAL Total sample required

Total mail out via support groups

% n n TOTAL REQUIRED 100% 100 200

Australia 83% 83 166 New South Wales 28.0% 28 56 Victoria 20.6% 21 42 Queensland 15.4% 15 30 South Australia 6.5% 7 14 Western Australia 8.2% 8 16 Tasmania 2.0% 2 4 Northern Territory 0.8% NA NA Australian Capital Territory 1.3% 1+1 2+2

New Zealand 17% 17 34 When the completed questionnaires are returned and the information they contain has been entered, the data will then be weighted to represent their proper proportions in the sample as shown in Table 2.2e.

Due to uncertainty about the likely response rates utilising the methods specified, it is impossible to predict the actual final sample size that will be achieved with any degree of accuracy, and hence the calculations shown in the tables are estimates only.


2.3. Validity and reliability The issues of validity and reliability were addressed by: • Adopting a methodology that can be replicated; • Having a widespread number of sample collection points (allowing collection of

information proportionally by state and country); • Pre-testing the questionnaire with actual respondents meeting the survey

selection criteria to ensure the issues are clearly understood; and • Maintaining quality standards such as:

- Controlling the questionnaire distribution process to the greatest degree that is possible under the circumstances;

- Ensuring that the completed questionnaires are handled properly on receipt; - Ensuring that appropriate code frames are developed from a sound

proportion of open-ended responses; - Ensuring that all open-ended responses are coded by an experienced coder; - Ensuring that questionnaire checking is conducted prior to data entry; and - Employing double-punch techniques to provide an accurate data file.


3 FINDING PARTICIPANTS

Because the prevalence in the general population of those at risk of an anaphylactic reaction is very small (FSANZ 2002), the more usual means of surveying (ie telephone or intercept) were not viable options for this study. Potential respondents were therefore accessed via alternative, targeted sources. To ensure that the survey is as representative as possible, the research design incorporated many distribution points, attempting coverage of every State and Territory in Australia and both islands of New Zealand. Whilst this involved a large amount of liaison and administration time, it also enabled a smaller impost on medical establishment staff, by spreading the required sample across locations. The methodology was therefore designed to include the following distribution points in both Australia and New Zealand: • Major hospitals or medical institutions in Australia and New Zealand (one

adult hospital and one children's hospital in each location, where possible); • All of those allergy specialists or immunologists who consent to be involved

(accessed via their professional association Australasian Society of Clinical Immunology and Allergy Inc [ASCIA]); and

• The major relevant support groups such as Food Anaphylaxis Children’s Training and Support (FACTS) and Allergy New Zealand (Allergy NZ).

3.1. Contact procedures Different procedures were required for each of the different types of questionnaire distribution points. Medical institutions Initial contact was made by NFO Donovan Research to obtain information on how to make submissions to each respective hospital / regional ethics committee, and to identify the appropriate person to approach within each hospital, to support the survey at that location. The relevant ethics applications were completed by Ms Shareen Lata at FSANZ and submitted to each committee by the established deadlines. FSANZ also addressed the follow-up queries and requests for additional information from each committee.


Private specialists Private specialists were approached via an email that was distributed by ASCIA. The email, similar to the letter that was sent to medical institutions, explained the purpose of the survey and requested the medical specialists support for the survey. The response received was minimal. Hence, the FSANZ project officer subsequently initiated a follow-up call and email distributed via ASCIA in an attempt to increase the participation rate. Support groups One large support group was located in each country to provide broad coverage in their respective countries. Only n=100 completed questionnaires in total were required from support groups and it was initially deemed unnecessary to contact more than two support groups. NFO Donovan Research approached the support groups. For Allergy NZ, a paid advertisement was placed in their newsletter: Allergy Today (Issue 103, Summer 2002). A copy of this advertisement is included in Appendix B. For FACTS, a donation was made to the organisation for them to insert a similar advertisement in their newsletter News Facts (December 2002). Each organisation had the opportunity to review the questionnaire before the advertising was placed in their newsletter. Both organisations were very supportive of the survey, and their assistance is greatly appreciated by the Project Team. In addition, members of the Australian Food and Grocery Council (i.e. large manufacturing firms such as Nestle, Kraft, Unilever, Cerebos, etc) volunteered to inform consumers calling for product information about the survey, and to give them the NFO Donovan free call phone number for them to request a questionnaire.

3.2. Criteria for selecting participants Official data sources (i.e. medical institutions and private specialists) For each of the official data collection avenues, participants (patients or clients) are to be selected by the appropriate medical specialists (hereinafter referred to as recruiter) based on selection criteria developed in consultation with the FSANZ project team and other allergy specialists. Clients to be included are to: Be aged over 1 year old; Be ‘at risk’ of anaphylactic reaction to certain foods or food ingredients; Have been seen at the clinic in the past 2 years; and Comply with the definition of anaphylaxis to ensure consistency,


To ensure that a broad cross-section of food allergies are covered, recruiters are to be asked to select clients that roughly represent the proportion of each allergy typically seen at their clinic. This should reduce the likelihood of attaining participants with the most common of food allergies, such as peanut allergies. Recruiters will be also asked to address the questionnaire pack to the parent or next-of-kin / carer where the client is aged 14 or less. A copy of the detailed selection criteria (Questionnaire Pack Instructions) is included in Appendix B. Support groups The use of advertisements in the support group magazines yielded fewer responses than expected, with a total of 75 calls received (53 from Australia and 22 from NZ). It is assumed that the NZ calls derived from Allergy NZ members and the Australian calls derived from FACTS members. To supplement the numbers attained via the advertisements in the support group publications, the editor of News Facts (Australia) was asked to select an additional n=116 members at random. They were sent the requisite number of questionnaires to be distributed to each State and Territory and asked to mail the pre-paid questionnaires. The additional numbers required from each State were:

New South Wales 24 Victoria 35 Queensland 24 South Australia 12 Western Australia 15 Tasmania 5 Australian Capital Territory 1

For the New Zealand sample an additional n=14 were required. Some of the potential support group participants who had phoned and left their contact number were called and asked to distribute one extra questionnaire to an eligible friend or acquaintance, where possible. Randomising is a technique to ensure representativeness, however since the sampling method for the support group sample was self-selecting anyway (people called the helpline in response to an ad), it was not deemed essential to specify a randomising procedure to attain the remainder. It was not possible to make this sample representative, because the nature of the membership of the support groups (ie whether actually at risk of anaphylaxis) is not known. Note that the support group sample will be analysed separately from that achieved via medical institutions.


4 DATA COLLECTION PROCEDURE

Each medical establishment or private specialist will be paid a set fee ($10) per questionnaire distributed, for: • selecting the names of potential respondents from their patient lists, • mailing them a questionnaire, and then • mailing them a reminder card two weeks later. The number of questionnaires to be mailed out by each organisation will be determined by the number of organisations who agree to participate and the size of the target population for each location (State or Territory in Australia3). For the two support groups, a payment was made for the insertion of an advertisement into their respective newsletters asking for participants to call a FREECALL 1800 number (in Australia) or FREECALL 0800 (in New Zealand). NFO Donovan Research will then send them a questionnaire pack. All contact details will be destroyed once the questionnaire is despatched, in accordance with the project's ethics in human research requirements (NHMRC, 2002).

4.1. Distribution of questionnaires Once the number of collection points and the sample mail out required from each have been decided, the contact person at each distribution point will be sent a distribution point kit that contains: • A step-by-step checklist for how to do what is required (including how to select

potential respondents using the definition detailed herein); • The required number of sealed questionnaire packs (plus one unsealed for

their records); • Blank postage-paid reminder cards for each questionnaire mailed out (the

contact person is advised to address these at the same time as the questionnaire, but to mail them out two weeks later); and

• A reply-paid notification card for use when the recruiter has completed mailing out their quota of questionnaires. This notification card serves as a trigger to generate the payment of $AUD/NZD10 per questionnaire, once they have completed each of the steps requested.

3 The New Zealand sample was approached as one unit, because of its small sample size overall

and the limited availability of appropriate hospitals and medical specialists.


Each questionnaire pack will comprise a pre-stamped, sealed envelope that contains: • The questionnaire; • A reply-paid envelope addressed to NFO Donovan Research; • A letter from FSANZ explaining that the packages were sent out blind (ie that the

patient’s contact details were not released to us) and encouraging them to participate.

• Two parental consent forms, one for retention by the participant and the other to be returned with the questionnaire by those aged 15 to 18 years old who are main grocery buyers.

All questionnaires are numbered and NFO Donovan Research holds a record of the range of questionnaire numbers that are sent to each participating organisation. This provides an audit mechanism as a form of quality control. The reader is reminded however, that for this aspect of the survey, the researchers cannot at any point identify individual participants and hence this process provides only limited control.

4.2. Delivery of distribution packs The distribution packs are to be sent by express post or air courier to the nominated contact person or recruiter at each distribution point.

4.3. Data collection period Whilst at the inception of this project we sought to shorten the data collection period to a single exercise to enable as much data as possible to be collected prior to 20 December 2002, as the project progressed it became exceedingly difficult to meet this proposed deadline, due to the delays in getting the necessary approvals from the relevant ethics bodies. This will need to be taken into account for any follow-up survey. The length of time taken by some agencies in approving the ethics submissions meant that the mail-outs to recruiters were staggered, with materials being sent to each institution as their ethics approvals were advised. This process commenced in mid-March 2003. Although a 6-week in-field period was originally allocated it is anticipated that overall, this will not be sufficient, due to the staggered mail-outs. Each progressive mail-out will therefore need to have a notification attached that advises of any extension to the deadline. The total data collection period required is therefore not known at the time this report was prepared. Recruiters are instructed to mail out the reminder cards 2 weeks after the questionnaires are mailed.


4.4. Support services for participants FREECALL helpline In order to provide some assistance to participants, the questionnaire contains details of a FREECALL number that can be used in Australia - 1800 688 122 and 0800 230 012 in New Zealand. NO translation services are available for those from a Culturally and Linguistically Diverse (CALD) background. CALD groups require specific provisions for their inclusion in such a survey and this was not defined in the RFT. However, there are instructions on the front of the questionnaire to the effect that participants can seek the help of their family or friends to complete the survey. New Zealand A Maori contact person was provided by NFO Donovan Research in New Zealand to deal with particular inquiries. Contact with this person will be facilitated through a call to the 0800 number provided. FSANZ contact details The name, contact number and email address for the relevant FSANZ project officer was also provided to provide an additional access point for any queries about the validity or authenticity of the survey, or to request further information about the survey and subsequently, its findings.


5 ETHICS APPROVALS

This project was somewhat unusual in that it required approvals from several hospital or regional ethics committees, as it involved a health issue, food anaphylaxis and required the cooperation of staff (medical specialists or recruiters) based within medical institutions. Accordingly, the questionnaire and research parameters had to be approved by every institution involved. The Commonwealth Department of Health and Ageing Ethics Committee initially approved the survey. Once approval was obtained from the Commonwealth Ethics Committee, submissions were made to individual hospital and regional ethics committees. This clearance process took a considerable amount of time and ultimately resulted in a delay in the start date.

5.1. Ethics applications submitted Institutions from which approvals were required are shown in the Table following.

AUSTRALIA: 1. Department of Health and Ageing Ethics Committee New South Wales 2. Central Sydney Area Health Service Ethics Review Committee (The Royal Prince

Alfred Hospital) 3. The Children’s Hospital at Westmead Ethics Committee (The Children's Hospital at

Westmead) Victoria 4. Royal Children’s Hospital Campus Ethic in Human Research Committee (The

Royal Children's Hospital) Queensland 5. Royal Children’s Hospital and Health Service District Ethics Committee (The

Royal Children's Hospital) South Australia 6. Flinders Clinical Research Ethics Committee (Flinders Medical Centre) 7. Women and Children’s Hospital Research Ethics Committee (The Women and

Children's Hospital) Western Australia 8. Princess Margaret Hospital Ethics Committee (Princess Margaret Hospital) 9. Sir Charles Gairdner Human Research Ethics Committee (Sir Charles Gairdner

Hospital)


Tasmania 10. Southern Tasmanian Health and Medical Research Ethics Committee (The Royal

Hobart Hospital) Australian Capital Territory 11. ACT Health and Community Care Human Research Ethics Committee (The

Canberra Hospital) No medical establishment that treats allergies could be located in the Northern Territory and hence it is not included in the research. However, Northern Territory respondents may be picked up via newsletters in the support group sample or in the institutional sample where they may have attended a clinic in another State.

NEW ZEALAND: 12. Auckland Ethics Committee (Auckland Hospital and Starship Children's Hospital) 13. Canterbury Ethics Committee (Christchurch Hospital) 14. Auckland District Health Board Maori Research Review Committee and Te

Committee Whakarite Only four hospitals in NZ were identified as offering allergy or immunology services in NZ. However, only 3 New Zealand hospitals were recruited as the fourth hospital, Wellington Hospital did not have an Immunologist/Allergist at the time of this survey.

5.2. Clinician support for the ethics applications Prior to submitting applications for ethics approvals, it was necessary for the Project team to identify specialist clinicians within each medical establishment and seek their support for the project. This was largely undertaken by NFO Donovan Research in the first instance, and was taken over by FSANZ in the latter stages.

The Project Research Team would particularly like to express thanks to the supporting clinicians in each of the medical institutions, without whose support the study could never have been completed.


6 PRIVACY ISSUES

In accordance with the Privacy Act 1988 (Australia) and the Privacy Act 1993 (New Zealand), the survey methodology that was adopted was designed to ensure the privacy of all participants. Although from the outset it was intended that the survey be repeated at some future time, it was not deemed imperative that the same participants be included in any follow-up research. It was therefore not necessary to develop procedures to facilitate longitudinal surveying. Accordingly, institutions and private clinicians who participate are not required to keep the contact details of those who are surveyed. Any future survey will therefore need to be undertaken with fresh participants.

6.1. Distribution points Strategies to preserve the privacy of participants were devised for each avenue. Each is discussed in turn: • Medical institutions

Initial distribution points were largely identified using publicly available information, and hence there are no specific requirements in terms of the Privacy Principles in relation to the organisation.

• Private specialists The specialists who were included were first contacted via ASCIA and given the opportunity to have their clients (patients) participate.

• Support groups Initial distribution points were largely identified using publicly available information, and hence there are no specific requirements in terms of the Privacy Principles in relation to the organisation.

6.2. Participants who are patients

Of most pressing concern for official sources was the issue of patient privacy and the preservation of doctor – patient confidentiality, as patients are understandably sensitive about the release of their medical details to third parties. The methodology described herein was designed to minimise any concerns in this regard. Patient confidentiality is preserved because no individual person's details are passed to NFO Donovan Research by the nominating organisation4.

4 The one exception to this is when a mailed-out package may be returned to NFO Donovan

Research (return to sender) due to incorrect address details, in which case the personal details are incorrect and hence not subject to any special provisions. In this case, the address label will be destroyed on receipt or shortly thereafter, and no record made of the name or other details.


6.3. All participants In accordance with the relevant Privacy Acts and Principles, the letter to be contained in the questionnaire pack to participants included statements to the effect that: • Their participation is voluntary; • Their personal details have not been passed on from the medical agency to the

research company (patients only); • Any information collected for the survey will be used for research purposes only; • Their responses will be anonymous; and • There are clearly stated mechanisms for complaints. Copies of the field stationery are included in Appendix B.


7 THE QUESTIONNAIRE

7.1. Development

The questionnaire was developed primarily NFO Donovan Research, in consultation with the FSANZ Project Team. NFO Donovan Research had retained two specialist consultants (Ms Vicki Dalton, who is a dietitian specialising in paediatric allergens, employed at the Royal Children’s Hospital in Melbourne, and Ms Judith Myers, a dietetic allergen specialist at the Royal Children’s Hospital in Melbourne) for the purpose of assisting with the process of questionnaire design and analysis and interpretation of the results.

7.2. Pre-testing of instrument Once the questionnaire had been developed to a suitably advanced stage it was tested initially by individual researchers unconnected to the project and then in a group situation with either those with serious food allergy (in accordance with the definition provided earlier) or parents of children with such an allergy. 7.2.1. Procedure The pre-test was conducted at the offices of NFO Donovan Research in Perth (Australia) amongst one focus group of seven potential respondents. Participants were recruited by word of mouth networking amongst the friends of staff and snowballing to their friends. All potential respondents were asked to volunteer themselves for inclusion if they were interested in taking part. Thus all participants were aware of the voluntary nature of the research. Each participant was posted a package containing the materials that would be sent in the final mailout to consumers (i.e. questionnaire, information letter, two copies of the consent form). They were requested to complete the questionnaire and then bring it along to the discussion. Participants were paid $40 for their time and input. 7.2.2. Outcome The focus group was well attended and yielded useful information to further refine the questionnaire. Overall there were no major problems, with most participants indicating that the questionnaire was comprehensive and easy to complete.


The main area of concern was the misinterpretation of the meaning of the word 'diagnosis'. Some participants took it to mean a formal medical opinion whereas others thought of it more generally as an issue of identification. This caused some to give different answers than they would have if they had adopted the other meaning. There were several areas of confusion: • The limited pre-codes available for adults whose allergies were discovered by

parents; • Participants from households where they were one of multiple sufferers had

difficulty in knowing from whose perspective they were answering at each point; and

• Participants from households where they were the only sufferer found it confusing where the questionnaire asked for all the allergies in the household (some answered correctly and some did not).

The problems identified above were remedied by: • Substituting the word 'diagnosis' for more general terms such as when the allergy

was first discovered or identified;

• Or alternatively, using a more explicit term 'formal medical diagnosis' to indicate

which particular circumstance was intended;

• Adding suitable pre-codes for adults who have had the allergy since childhood; • Changing the order of the questions at the start of the questionnaire so that all

food allergies in the household was asked first, followed by the most serious food allergies. This allows the respondent to be focussed on the person with the most serious allergies throughout the remaining questions (until directed otherwise);

• Using additional text instructions.

Q9 How was the food allergy first identified for the person with the most serious food allergy? PLEASE TICK ALL THAT APPLY.

Had a reaction ................................................................................... ❑ 1

From parent (s) .................................................................................. ❑ 2

From an alternative health practitioner (eg Naturopath) .......................... ❑ 3

Worked it out for self........................................................................... ❑ 4

Others (PLEASE WRITE IN)................................................................................

..........................................................................................................................

Don't know / can't recall ...................................................................... ❑ 9

Q11a Has a formal medical diagnosis been made for the person with the most serious food allergy at any time?

PLEASE TICK ONE BOX ONLY AND FOLLOW DIRECTION TO THE NEXT QUESTION.

Yes.................................................................................................... ❑

No.....................................................................................................❑ 2


Q30 For this question we would like you to examine each of the labels in turn and do two things:

❶

Circle any ingredients that you think might be unsuitable for any person(s) in your household with an allergy. Even if you don't circle any ingredient, please answer part ❷ .

❷ Indicate your assessment of the product.

• An additional problem was that where the questionnaire sought to measure the effectiveness of the statements 'may contain traces of nuts' (Q28a) and 'made in the same premises as products containing nuts' (Q29a), some conceptual difficulty was experienced in that some seemed to answer from their own perspective rather than from that of a person with a nut allergy, as requested.

This was addressed by making the wording more general:

Although no one expressed any particular difficulty with the labelling exercise (Q30), on examination of the completed questionnaires it was later discovered that one or two had not circled the problem ingredient as they were instructed. It was therefore decided to reword the instructions and rearrange the layout, as shown below, in an attempt to make it easier to follow.

Q28a Now consider the statement 'made in the same premises as products containing …'? In your opinion, how useful would this statement be to you if you had an allergy to the particular ingredient listed? Would you say …?" PLEASE TICK ONE BOX ONLY.

Not very useful because it doesn't say whether the ingredient I am

allergic to is definitely in the product or not .......................................................❑ 1

Quite useful because it reminds me I may be eating a product

containing the ingredient I am allergic to...........................................................❑ 2

Very useful because I am told that there is a chance that the ingredient

I am allergic to is present................................................................................❑ 3

Not sure / don't know .....................................................................................❑ 9

LABEL 1: BREAD INGREDIENTS UNBLEACHED BAKER’S FLOUR, YEAST, SALT,VEGETABLE OILS, SOYA FLOUR, EMULSIFIERS(481, 472e), PRESERVATIVE (282), VITAMIN(THIAMIN), WATER ADDED. NO ARTIFICIALFLAVOURS.

(40) I would avoid this product ..... ❑ 1

This product is suitable.......... ❑ 2

Don't know.......................... ❑ 9


Two questionnaires are used, one for Australia and one for New Zealand. There is very little variation between the two. Different demographic information is collected for each country (location, ethnic origin, and education levels). In the New Zealand questionnaire there is also an additional statement added at Q16 relating to the Manufactured Food Database. Copies of the questionnaires (Australian and New Zealand versions) are included in Appendix A.


8 FIELD DOCUMENTATION

Various letters and documents had to be devised for the conduct of the survey: A letter to medical institutions requesting their support for the survey; A letter to private specialists asking them to participate; Sampling instructions (instructions for medical institutions and private specialists

on how to select participants and manage the paperwork involved); A letter to participants (the 'Survey Information Sheet'); A parental consent form (for where the person answering was the person with an

allergy, and aged under 18 but over 14); and Reminder cards.

Copies of each of these are included in Appendix B.


9 REFERENCES AND BACKGROUND INFORMATION

Food Standards Australia New Zealand. 2002, Request for Tender 2002/4: Quantitative Consumer Research on Allergen Labelling, [online]. Available: http://www.foodstandards.gov.au/_srcfiles/RFT_Allergy_labelling.pdf. [2002, June 10]. National Health and Medical Research. 2002. ‘Human Research Ethic Handbook’, AusInfo, Canberra. Although not referred to explicitly in the text, the following paper also assisted in informing the research design: Preeti J, Modifi S & Sicherer S. 2002, ‘Interpretation of commercial food ingredient labels by parents of food-allergic children’, Journal of Allergy Clinical Immunology, vol 108, no 8; pp. 1019-1021.


APPENDIX B 1. NEW ZEALAND QUESTIONNAIRE

2. NEW ZEALAND INFORMATION LETTER 3. NEW ZEALAND CONSENT FORM

2003

New Zealand

BenchmarkFood Allergen

Labelling Survey

for

Welcome to the FSANZ Benchmark Food Allergen Labelling Survey

2003

Food Standards Australia New Zealand (FSANZ) has asked NFO Donovan Research to conduct a survey on its behalf into issues relating to food labelling for people with allergies to certain foods or ingredients. You have been selected for inclusion in the survey because either you or someone else in your family (whanau) has a food allergy. The survey is mainly about how helpful you find the labelling information that is provided on packaged food and drink products for making suitable food choices. It is not a test of your product knowledge but of how well the food labelling works. Your responses are very important as they will help FSANZ further improve food standards in New Zealand and Australia.

WHO SHOULD COMPLETE THE SURVEY? The main grocery buyer for the household should complete the survey.

WHAT IF I NEED HELP? Friends (hoa) or family members (whanau) can help you complete the form, or you can ring this Free Call number: 0800 230 012 (New Zealand).

WHO SHOULD I TALK TO FOR MORE INFORMATION ABOUT THE SURVEY? You can contact FSANZ by phone on 04-473 9942 (reception) or email [email protected].

WHERE CAN I MAKE A COMPLAINT IF I AM NOT HAPPY ABOUT THE SURVEY? If you have any queries or concerns regarding your rights as a participant in this survey, you may wish to contact a Health and Disability Advocate on 0800 555 050 (Northland to Franklin) or 0800 377 766 (South Island) or 377 7501 (Christchurch). For Auckland District Health Board Maori Health Support, please contact Mata Forbes (Coordinator / Advisor-Maori Health Services) on (09) 307 4949 extn 7292. Please quote project number AKX/02/00/348. This study has received ethical approval from the Auckland Ethics Committee on behalf of the Canterbury Ethics Committee.

ARE MY ANSWERS CONFIDENTIAL? This survey has been designed in line with the privacy laws of New Zealand and Australia. The completed questionnaires will remain anonymous. Any information you provide to us will be used for research purposes only.

Note: you may have received this questionnaire from several different sources. If you have, we ask that you complete only one questionnaire.

Please read all the questions carefully and follow the instructions after each question. The instructions are in bold.

Where you see this symbol, there is very important information on whether or not you need to answer certain questions. Please read the information and follow the instructions.

Your contribution to this survey is valuable. Please answer the questions and send back your completed form to us in the reply paid envelope by 30 May,

2003. You do not need a postage stamp.

.i

NFO DONOVAN RESEARCH: FSANZ ALLERGEN LABELLING SURVEY (NZ) C02039

- 1 - IF YOU HAVE RECEIVED THIS QUESTIONNAIRE AND ARE NOT THE MAIN GROCERY

BUYER, PLEASE GIVE THIS QUESTIONNAIRE TO THE PERSON(S) WHO MAINLY OR JOINTLY DOES THE FOOD SHOPPING FOR YOUR HOUSEHOLD.

SECTION A Background

Q1 Please tick any of the following statements that are true. YOU MAY NEED TO TICK MORE THAN ONE BOX. (8-11)

I am the main grocery buyer ............................................ ❑ 1

I am jointly responsible for grocery purchases..................... ❑ 2

I have a serious food allergy ............................................. ❑ 3

I am the person to whom the envelope was addressed ......... ❑ 4

Q2 How many people in total in your household have a serious food allergy *? (12-13)

WRITE IN NUMBER OF PEOPLE.

*By serious food allergy we mean a reaction that involves one or more of the following symptoms due to exposure to a particular food or food ingredient (allergens):


IF ONLY ONE PERSON IN YOUR HOUSEHOLD HAS A SERIOUS FOOD ALLERGY OF THE TYPE DESCRIBED, PLEASE GO TO Q5.

Q3 If there is more than one person with a food allergy in your household, please indicate all the food allergies for all members of the household. (14-37)

PLEASE TICK AS MANY BOXES AS APPLY OR WRITE IN THE SPACE PROVIDED.

Peanut (groundnuts) .....................❑ 01 Tree nuts (eg cashews, walnuts)............. ❑ 06

Milk ...........................................❑ 02 Fish ................................................... ❑ 07

Soy ............................................❑ 03 Shellfish.............................................. ❑ 08

Wheat .........................................❑ 04 Sulphites (food additives 220-225, 228) .. ❑ 09

Egg.............................................❑ 05 Sesame Seeds ..................................... ❑ 10

Other (PLEASE WRITE IN) ____________________________________

_______________________________ ____________________________________ Q4 What food allergy/allergies, if any, could result in a potentially life threatening reaction to

any person in your household with a food allergy?

PLEASE TICK AS MANY BOXES AS APPLY OR WRITE IN THE SPACE PROVIDED. (38-61)


Milk ...........................................❑ 02 Fish ................................................... ❑ 07

Soy ............................................❑ 03 Shellfish.............................................. ❑ 08


Egg.............................................❑ 05 Sesame Seeds ..................................... ❑ 10


OFFICE USE

WAVE 1 (1)

Country 1-(2)

QNA (3-6)

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- 2 -

_______________________________ ____________________________________

WE WOULD NOW LIKE YOU TO THINK ABOUT THE PERSON IN YOUR HOUSEHOLD WHO HAS THE MOST SERIOUS ALLERGY TO A SPECIFIC FOOD(S) OR FOOD INGREDIENT(S) AS YOU COMPLETE THESE QUESTIONS.

Q5 The person with the most serious food allergy is … PLEASE TICK ONE BOX ONLY. (62)

Me ................................................................................ ❑ 1

My partner ..................................................................... ❑ 2

My child (for example biological-, foster-, step-, etc) ............ ❑ 3 My parent (for example mum, dad, step-, foster-, etc) ......... ❑ 4 My grandchild (for example biological-, foster-, step-, etc) .... ❑ 5 Other (PLEASE WRITE IN) _____________________________

Q6 What is the sex of the person with the most serious food allergy? PLEASE TICK ONE BOX ONLY.

Male ........................................................❑ 1

............................................................................... (63)

Female.....................................................❑ 2 Q7 What is the age of the person with the most serious food allergy? PLEASE TICK ONE BOX ONLY.

Under age 3 years .....................................❑ 1

3-5 years .................................................❑ 2

............................................................................... (64)

6-12 years................................................❑ 3

13-17 years ..............................................❑ 4

18 – 24 years............................................❑ 5

25 years or more.......................................❑ 6 Q8 What sort(s) of food allergy does the person with the most serious food allergy have?

PLEASE TICK ALL THAT APPLY.

Peanuts (groundnuts) ................................ ❑ 01

Milk ......................................................... ❑ 02

Soy ......................................................... ❑ 03

Wheat...................................................... ❑ 04

Egg (eg raw or cooked egg white or yolk)...... ❑ 05

Tree nuts (eg cashews, walnuts) .................. ❑ 06

Fish ......................................................... ❑ 07

Shellfish ................................................... ❑ 08

Sulphites (food additives 220-225, 228)........ ❑ 09

Sesame seeds ........................................... ❑ 10

Other (PLEASE WRITE IN) _______________________________________________________________ (8-31) Q9 How was the food allergy first identified for the person with the most serious food allergy?


Had a reaction ............................................................... ❑ 1

..................................................................................................... (32-37)

From parent (s) .............................................................. ❑ 2 From an alternative health practitioner (eg Naturopath) ....... ❑ 3

Worked it out for self ....................................................... ❑ 4 Other (PLEASE WRITE IN)_________________________________

IF MORE THAN ONEPERSON IN HOUSEHOLDHAS A SERIOUS FOODALLERGY, PLEASESELECT ONE PERSONONLY WHEN

OFFICE USE

RPT (1-6)

CARD 2 (7)

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- 3 -________________________________________________________

Don't know / can't recall................................................... ❑ 9


- 4 -Q10 Approximately how long ago was the food allergy first identified for the person with the

most serious food allergy? PLEASE TICK ONE BOX ONLY.

Less than 6 months ago ................................................... ❑ 1

........................................................................................................... (38)

More than 6 months but less than a year ago ...................... ❑ 2 More than a year but less than two years ago...................... ❑ 3 More than two years ago .................................................. ❑ 4 Can't remember.............................................................. ❑ 9


PLEASE TICK ONE BOX ONLY AND FOLLOW DIRECTION TO THE NEXT QUESTION. (39)

Yes...................................................... ❑ 1 GO TO Q11b

No....................................................... ❑ 2 GO TO Q12

Q11b Who made the formal diagnosis for the person with the most serious food allergy? PLEASE TICK ALL BOXES THAT APPLY.

A GP / doctor / medical practitioner ................................... ❑ 1

..................................................................................................... (40-43)

A doctor specialising in allergies ........................................ ❑ 2 A dietitian ...................................................................... ❑ 3

An alternative health practitioner (eg Naturopath) ............... ❑ 4 Other (PLEASE WRITE IN)_________________________________

________________________________________________________


Q11c How was the formal diagnosis made for that person? PLEASE TICK ALL BOXES THAT APPLY.

Skin prick test ................................................................ ❑ 1

..................................................................................................... (44-47)

RAST (Blood test)............................................................ ❑ 2 Elimination diet............................................................... ❑ 3 Other (PLEASE WRITE IN)_________________________________

________________________________________________________

Don't know / can't recall................................................... ❑ 9 EVERYONE ANSWER Q12 Has the person with the most serious food allergy become less allergic since the formal

diagnosis? PLEASE TICK ANY BOXES THAT APPLY.

Reactions are less severe to all food items .......................... ❑ 1

..................................................................................................... (48-53)

Reactions are less severe to some food items...................... ❑ 2 Reactions are less frequent to all food items........................ ❑ 3 Reactions are less frequent to some food items ................... ❑ 4 Is no longer allergic at all ................................................. ❑ 5

No, is still allergic............................................................ ❑ 6 Don't know / haven't tried or tested................................... ❑ 9

Q13a Has the person with the most serious food allergy had a severe allergic reaction since the

allergy was identified?

PLEASE TICK ONE BOX AND FOLLOW DIRECTION TO THE NEXT QUESTION. (54)

Yes.................................................... ❑ 1 GO TO Q13b

No..................................................... ❑ 2 GO TO Q14


- 5 -Don't know / can't recall....................... ❑ 9 GO TO Q14


- 6 -Q13b If yes, can you please describe the circumstances in which this happened? PLEASE WRITE IN.

_____________________________________________________________ (55-62)

_____________________________________________________________

_____________________________________________________________

SECTION B Managing the allergy

Q14 Which of the following words tell you that the ingredients that the person with the most serious food allergy needs to avoid, may be present in the food product?

PLEASE TICK ALL THE BOXES THAT APPLY. (63-80)

Whey.......................❑ 01 Casein .......................❑ 10 Thickener .............................. ❑ 19

Tofu ........................❑ 02 Albumin .....................❑ 11 Textured vegetable protein ...... ❑ 20

Couscous .................❑ 03 Lactose ......................❑ 12 Tempeh ................................ ❑ 21

Ovalbumin ...............❑ 04 Lecithin......................❑ 13 Starch .................................. ❑ 22

Tamari .....................❑ 05 Cornflour....................❑ 14 Butterfat ............................... ❑ 23

Maltodextrin .............❑ 06 Semolina....................❑ 15 Anchovies..............................❑ 24

Praline .....................❑ 07 Tahini ........................❑ 16 Surimi ................................. ❑ 25

Baker's flour .............❑ 08 Icing sugar mix ...........❑ 17 Marzipan .............................. ❑ 26

Vegetable oil.............❑ 09 Lactalbumin................❑ 18 Polenta .................................❑ 27

Other (PLEASE WRITE IN) ________________________ ____________________________

_______________________ ________________________ ____________________________

WE'D NOW LIKE YOU TO CONSIDER YOUR WHOLE HOUSEHOLD IN ANSWERING THE REMAINING QUESTIONS.

Q15 Considering all the members of your household who have food allergies, as far as you know, how would each person(s) in your household with food allergy/allergies approach eating foods with the following ingredient(s)?

PLEASE TICK ONE BOX FOR EACH OF THE PROBLEM INGREDIENTS FOR YOUR HOUSEHOLD. They try, but can't avoid it completely


They never eat it at all Don't know

Peanuts (groundnuts) .............................. ❑ 1 ..................❑ 2 ................. ❑ 3.................. ❑ 9 (8)

Milk ...................................................... ❑ 1 ..................❑ 2 ................. ❑ 3.................. ❑ 9 (9)

Soy ....................................................... ❑ 1 ..................❑ 2 ................. ❑ 3.................. ❑ 9 (10)

Wheat ................................................... ❑ 1 ..................❑ 2 ................. ❑ 3.................. ❑ 9 (11)

Egg ....................................................... ❑ 1 ..................❑ 2 ................. ❑ 3.................. ❑ 9 (12)

Tree nuts (eg cashews, walnuts) ................ ❑ 1 ..................❑ 2 ................. ❑ 3.................. ❑ 9 (13)

Fish ...................................................... ❑ 1 ..................❑ 2 ................. ❑ 3.................. ❑ 9 (14)

Shellfish ................................................ ❑ 1 ..................❑ 2 ................. ❑ 3.................. ❑ 9 (15)

Sulphites (food additives 220-225, 228) ..... ❑ 1 ..................❑ 2 ................. ❑ 3.................. ❑ 9 (16)

Sesame seeds ........................................ ❑ 1 ..................❑ 2 ................. ❑ 3.................. ❑ 9 (17)

Other (PLEASE WRITE IN)

___________________________________❑ 1 ..................❑ 2 ................. ❑ 3.................. ❑ 9 (18)

___________________________________❑ 1 ..................❑ 2 ................. ❑ 3.................. ❑ 9 (19)

OFFICE USE

RPT (1-6)

CARD 4 (7)

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- 7 -Q16 As the person who mainly buys the groceries, how often do you do the following things to

help manage the food allergy/allergies of all the persons in your household?

PLEASE TICK ONE BOX FOR EACH STATEMENT.

Always Often Occasionally Never Don't know

Buy unprocessed foods where possible ........ ❑ 1 ........... ❑ 2........... ❑ 3............❑ 4 ............. ❑ 9 (20)

Buy foods in sealed packages where

possible ................................................. ❑ 1 ........... ❑ 2........... ❑ 3............❑ 4 ............. ❑ 9 (21)

Read food labels carefully.......................... ❑ 1 ........... ❑ 2........... ❑ 3............❑ 4 ............. ❑ 9 (22)

Contact the food manufacturer about

what's in a food ....................................... ❑ 1 ........... ❑ 2........... ❑ 3............❑ 4 ............. ❑ 9 (23)

Buy loose or bulk foods............................. ❑ 1 ........... ❑ 2........... ❑ 3............❑ 4 ............. ❑ 9 (24)

Check food lists provided by allergy

support group(s)...................................... ❑ 1 ........... ❑ 2........... ❑ 3............❑ 4 ............. ❑ 9 (25)

Buy same brand of product (s) known

from past experience to be allergy free ....... ❑ 1 ........... ❑ 2........... ❑ 3............❑ 4 ............. ❑ 9 (26)

Check food lists provided by the

Manufactured Food Database ..................... ❑ 1 ........... ❑ 2........... ❑ 3............❑ 4 ............. ❑ 9 (27)

Q17a Are there any broad product categories (eg dairy foods, bread, etc) for which you

particularly need to read labels because the majority of them are likely to cause problems for the person(s) with the allergy/allergies?

PLEASE TICK ONE BOX ONLY AND FOLLOW DIRECTION TO THE NEXT APPLICABLE QUESTION. (28)

Yes, I have to check some product categories ........... ❑ 1 GO TO Q17b

No, I have to check all product categories ................ ❑ 2 GO TO Q18

Don't know / can't recall / not applicable.................. ❑ 9 GO TO Q18

Q17b If yes, please tick which of the following broad product categories you check for that reason.

TICK ALL BOXES THAT APPLY. (29-78)

Dairy products .................. ❑ 01 Canned foods ..................❑ 14 Breakfast cereals ............❑ 26

Vegetable oils ................... ❑ 02 Breads ..........................❑ 15 Pasta .............................❑ 27

Margarines ....................... ❑ 03 Mayonnaises ..................❑ 16 Noodles..........................❑ 28

Butter / dairy spreads ........ ❑ 04 Frozen foods ...................❑ 17 Rice ..............................❑ 29

Cordials ........................... ❑ 05 Spreads .........................❑ 18 Sweet biscuits .................❑ 30

Soft drinks ....................... ❑ 06 Fruit juices......................❑ 19 Confectionery..................❑ 31

Savoury biscuits/crackers ... ❑ 07 Savoury snack foods ........❑ 20 Infant formula.................❑ 32

Baby foods ....................... ❑ 08 Soups ............................❑ 21 Pre-prepared meals..........❑ 33

Smoked / cured meats ....... ❑ 09 Cakes/ muffins/ pastries ..❑ 22 Chocolates .....................❑ 34

Sauces (eg chilli, BBQ,

Worcestershire)................. ❑ 10

Muesli ............................❑ 23

Cook / simmer / pasta

sauces .......................... ❑ 35

Sausages ........................ ❑ 11 Fish and fish products.......❑ 24 Eggs and egg products .....❑ 36

Alcoholic drinks................. ❑ 12 Ice cream .......................❑ 25 Desserts.........................❑ 37

Dried fruit ........................ ❑ 13 Other(PLEASE WRITE IN)

____________________ __________________ ___________________


- 8 -

____________________ __________________ ___________________


- 9 -

SECTION C Knowledge and information

WE'D LIKE YOU TO NOW THINK ABOUT WHEN A SERIOUS FOOD ALLERGY FIRST BECAME AN ISSUE IN YOUR HOUSEHOLD.

Q18 When a serious food allergy first became an issue in your household, where did you get the relevant information about what food(s) and food ingredient(s) needed to be avoided? PLEASE TICK ALL BOXES THAT APPLY.

From a GP / doctor / medical practitioner....................................................... ❑ 01 (8-27)

From a doctor specialising in allergies ........................................................... ❑ 02

From a dietitian ......................................................................................... ❑ 03

From parent(s) ......................................................................................... ❑ 04

From an allergy support group ..................................................................... ❑ 05

From an alternative health practitioner (ie like a naturopath, iridologist, etc) ...... ❑ 06

From book(s)............................................................................................. ❑ 07

From the web / Internet .............................................................................. ❑ 08

From a friend / acquaintance ....................................................................... ❑ 09

From the Manufactured Food Database.......................................................... ❑ 10

Other (PLEASE WRITE IN) ______________________________________________

___________________________________________________________________

___________________________________________________________________

___________________________________________________________________

Don't know / can't recall..............................................................................❑ 99 Q19a When a serious food allergy was first identified, was it easy or difficult to get the

information you needed to help you avoid the foods of concern?

PLEASE TICK ONE BOX ONLY AND FOLLOW DIRECTION TO NEXT APPLICABLE QUESTION. (28)

It was easy to find out what foods needed to be avoided ............. ❑ 1 GO TO Q19b

It was difficult to find out what foods needed to be avoided ......... ❑ 2 GO TO Q19b

Don't know / can't recall ......................................................... ❑ 9 GO TO Q20a Q19b What made it easy / difficult? PLEASE WRITE IN.

____________________________________________________________ (29-36)

____________________________________________________________

____________________________________________________________

____________________________________________________________ Q20a Were you shown at any time how to identify the ingredient(s) of concern, using food

labels? PLEASE TICK ONE BOX ONLY AND FOLLOW DIRECTION TO NEXT APPLICABLE QUESTION. (37)

Yes............................................................❑ 1 GO TO Q20b

No.............................................................❑ 2 GO TO Q21

Don't know / can't recall...........................❑ 9 GO TO Q21

OFFICE USE

RPT (1-6)

CARD 3 (7)

.i


- 10 -Q20b If you were shown how to identify the ingredient(s) of concern when using food labels,

who provided this assistance?

PLEASE TICK ALL BOXES THAT APPLY.

My GP / doctor / medical practitioner .............................. ❑ 01 (38-50)

A doctor specialising in allergies ..................................... ❑ 02

A dietitian ................................................................... ❑ 03

An alternative health practitioner.................................... ❑ 04

An allergy support group ............................................... ❑ 05

A friend/acquaintance ................................................... ❑ 06

Parent(s) ................................................................... ❑ 07

Other (PLEASE WRITE IN) ____________________________

_________________________________________________

_________________________________________________

Don't know / can't recall................................................❑ 99

Q21a Have you joined any group that provides information about food allergies?


Yes..................................................❑ 1 GO TO Q21b

No ...................................................❑ 2 GO TO Q22

Don't know / can't recall.................❑ 9 GO TO Q22

Q21b What is the name of the group you joined?

PLEASE WRITE IN.

____________________________________________________________ (79-84)

____________________________________________________________


- 11 -

SECTION D Food labels

Q22 Here are a number of things people have said about selecting food products. Please tell me how strongly you agree or disagree with each statement.


Strongly agree

Tend to agree

Neither agree nor

disagree

Tend to disagree

Strongly disagree

Don't know

I've always been able to find any information I

need on a food or drink label ..............................❑ 1 .......❑ 2 ...... ❑ 3....... ❑ 4....... ❑ 5 ....... ❑ 9 (8)

When I read the labels on food products, I just

focus on one or two key things, such as the

levels of fat or if there are preservatives ..............❑ 1 .......❑ 2 ...... ❑ 3....... ❑ 4....... ❑ 5 ....... ❑ 9 (9)

Generally speaking, it's easy to understand and

use the information on food labels .......................❑ 1 .......❑ 2 ...... ❑ 3....... ❑ 4....... ❑ 5 ....... ❑ 9 (10)

I find some information on food labels really

useful or important ...........................................❑ 1 .......❑ 2 ...... ❑ 3....... ❑ 4....... ❑ 5 ....... ❑ 9 (11)

It's hard to tell which parts of the label are

advertising and which are standard information

manufacturers have to put on .............................❑ 1 .......❑ 2 ...... ❑ 3....... ❑ 4....... ❑ 5 ....... ❑ 9 (12)

I don't have enough time to read food labels

when I'm shopping, even if I wanted to................❑ 1 .......❑ 2 ...... ❑ 3....... ❑ 4....... ❑ 5 ....... ❑ 9 (13)

I'm very interested in food label information ........❑ 1 .......❑ 2 ...... ❑ 3....... ❑ 4....... ❑ 5 ....... ❑ 9 (14) Q23 When buying packaged foods in general, how often do you look at the food labels? PLEASE TICK ONE BOX ONLY. (15)

Only when I buy a product for the first time.................. ❑ 4

Only occasionally when I buy a product........................ ❑ 2

Most of the times I buy a product................................ ❑ 3

Every time I buy a product ......................................... ❑ 4

Can't say / Don't know ..............................................❑ 9 Q24 How much do you feel you can trust the information that is given on food labels? Please

give an overall assessment. PLEASE TICK ONE BOX ONLY.

I completely trust what the labels say.......................... ❑ 1 (16)

I'm pretty sure I can trust what the labels say .............. ❑ 2

I'm not at all sure whether to trust the labels or not ...... ❑ 3

Can't say / Don't know ..............................................❑ 9 Q25 In general, when reading food labels because of concerns about allergens, how often are

you unsure about food items or particular ingredients? PLEASE TICK ONE BOX ONLY AND FOLLOW DIRECTION TO THE NEXT QUESTION. (17)

Always unsure............................ ❑ 1 GO TO Q26

Often unsure.............................. ❑ 2 GO TO Q26

Sometimes unsure ...................... ❑ 3 GO TO Q26

Never unsure ............................. ❑ 4 GO TO Q27a

Don't know ................................❑ 9 GO TO Q27a

OFFICE USE

RPT (1-6)

CARD 5 (7)


- 12 -Q26 If you are unsure about what is written in the ingredient list, which of the following do

you do? PLEASE TICK ALL BOXES THAT APPLY.

Avoid using / eating the food ..............................................................................................❑ 01 (18-27)

Ring the manufacturer and ask ...........................................................................................❑ 02

Ring your dietitian or doctor................................................................................................❑ 03

Ring a support group...........................................................................................................❑ 04

Ring a friend........................................................................................................................❑ 06

Try a small amount / give a small amount to the person with the allergy .........................❑ 07

Eat the food anyway / give the food to the person with the allergy....................................❑ 08

Don't know ..........................................................................................................................❑ 99

Other (PLEASE WRITE IN) _____________________________________________________

__________________________________________________________________________

Q27a Consider the statement 'may contain traces of …' which might appear on a product label. If you had an allergy to the particular ingredient mentioned, how useful is this statement to you?

PLEASE TICK ONE BOX ONLY.

Not very useful because it doesn't say whether the ingredient I am allergic to is

definitely in the product or not ................................................................................. ❑ 1 (28)

Quite useful because it reminds me I may be eating a product containing the

ingredient I am allergic to ....................................................................................... ❑ 2

Very useful because I am told that there is a chance that the ingredient I am

allergic to is present ...............................................................................................❑ 3

Not sure / don't know ............................................................................................. ❑ 9

Q27b What would you do if a label on a product said it may contain traces of … [the ingredient you are allergic to]?


Always avoid ................................ ❑ 1 (29)

Sometimes / usually avoid.............. ❑ 2

Always use................................... ❑ 3

Not sure / don't know .................... ❑ 9

Q28a Now consider the statement 'made in the same premises as products containing …'? If you had an allergy to the particular ingredient mentioned, how useful is this statement to you?









Q28b What would you do if a label on a product said it was 'made in the same premises as products containing … [the ingredient you are allergic to]'?


Always avoid ................................ ❑ 1 (31)


Always use................................... ❑ 3



- 13 -Q29a Now consider the statement 'made on the same equipment as products containing …'? If

you had an allergy to the particular ingredient mentioned, how useful is this statement to you? PLEASE TICK ONE BOX ONLY.







Not sure / don't know ............................................................................................. ❑ 9 Q29b What would you do if a label on a product said it was 'made on the same equipment as

products containing … [the ingredient you are allergic to]'? PLEASE TICK ONE BOX ONLY.

Always avoid ................................ ❑ 1 (33)


Always use................................... ❑ 3

Not sure / don't know .................... ❑ 9 THIS QUESTION IS MAINLY ABOUT HOW HELPFUL THE LABELLING INFORMATION

PROVIDED ON PACKAGED FOOD AND DRINK PRODUCTS IS FOR IDENTIFYING FOODS THAT ARE SUITABLE FOR THE PEOPLE IN YOUR HOUSEHOLD WITH ALLERGIES. IT IS NOT A TEST OF YOUR PRODUCT KNOWLEDGE BUT OF HOW WELL THE LABELLING WORKS.


❶



LABEL 1: BREAD (34-41) INGREDIENTS UNBLEACHED BAKER’S FLOUR, YEAST, SALT,

VEGETABLE OILS, SOYA FLOUR, EMULSIFIERS (481,

472e), PRESERVATIVE (282), VITAMIN (THIAMIN),

(42) I would avoid this product .......... ❑ 1

This product is suitable .............. ❑ 2

Don't know............................... ❑ 9

LABEL 2: RYE BREAD (43-50) INGREDIENTS UNBLEACHED BAKER’S FLOUR, YEAST, RYE MEAL, RYE

FLOUR, VEGETABLE OILS, SALT, GLUTEN, VINEGAR,

SOYA FLOUR, SEMOLINA, EMULSIFIERS (471, 481),



Don't know............................... ❑ 9

LABEL 3: CHEESE (52-59) INGREDIENTS Soy extract, vegetable oils, casein, sea salt, mineral

salt (339), food acid, flavour, colour (annatto,



Don't know............................... ❑ 9

.i


- 14 -

❶



LABEL 4: MAYONNAISE (61-68) INGREDIENTS SUGAR, VINEGAR, VEGETABLE OIL, THICKENER

(1422), SALT, EGG, MUSTARD, VEGETABLE GUM

(415), MILK SOLIDS NON-FAT, COLOURS (101, 160A),

ANTIOXIDANT (320), WATER ADDED.



Don't know............................... ❑ 9

LABEL 5: SPREAD (70-77)

INGREDIENTS SUGAR, VEGETABLE OILS, HAZELNUTS, SKIM MILK

POWDER, LOW FAT COCOA, EMULSIFIER, WATER

ADDED.



Don't know............................... ❑ 9

LABEL 6: SOY MILK (8-15)

INGREDIENTS WATER, SOY PROTEIN ISOLATE, SUNFLOWER OIL,

MALTODEXTRIN, SUGAR, MINERAL SALTS (339, 340,

509, 529), FOOD ACIDS (332, 338), VITAMINS

(VITAMINS A, B2, B12).



Don't know............................... ❑ 9

LABEL 7: MARGARINE (17-24)

INGREDIENTS Sunflower oil, vegetable oils, water, salt, milk solids,

emulsifiers (471), natural food acid, preservative

(202), natural colours, vitamins (a, d), flavour.

(25) I would avoid this product ...........❑ 1

This product is suitable ...............❑ 2

Don't know ...............................❑ 9

LABEL 8: DRINK (26-33)

INGREDIENTS SUGAR, MALTODEXTRIN, COCOA, WHEY POWDER,

BARLEY AND MALT EXTRACT, MINERALS (CALCIUM

PHOSPHATE, IRON PYROPHOSPATE), VITAMINS (A,

B1, B2, D3, NIACIN). ALL NATURAL INGREDIENTS,

NO ARTIFICIAL COLOURS OR FLAVOURS.

(34) I would avoid this product...........❑ 1


Don't know ...............................❑ 9

LABEL 9: MARZIPAN (35-43)

INGREDIENTS Sugar, almonds, glucose syrup, glucose.

(44) I would avoid this product ...........❑ 1


Don't know ...............................❑ 9

OFFICE USE

RPT (1-6)

CARD 6 (7)


- 15 -

❶



OFFICE USE

RPT (1-6)

CARD 7 (7)

LABEL 10: SAUCE (45-52)

INGREDIENTS VINEGAR, MOLASSES, SUGAR, SALT, ANCHOVIES,

TAMARINDS, SHALLOTS, GARLIC, SPICES,

FLAVOURINGS, WATER ADDED.

(53) I would avoid this product........... ❑ 1

This product is suitable............... ❑ 2

Don't know ............................... ❑ 9


INGREDIENTS WATER, SUGAR, REHYDRATED VEGETABLES, PEANUT

BUTTER, RECONSTITUTED LEMON JUICE,

DESSICATED COCONUT, HYDROLYSED VEGETABLE

PROTEIN, FOOD ACID (260), SALT, SPICES, SOY

SAUCE, EMULSIFIER, VEGETABLE GUMS.



Don't know ............................... ❑ 9

LABEL 12: MUESLI BAR (63-70)

INGREDIENTS Oats, glucose syrup, sugar, fruit, vegetable oil, puffed

cereal, rolled wheat, humectant, roasted almonds,

honey, desiccated coconut, skim milk powder, natural

emulsifier, flavour, food acid, natural colour. May

contain traces of peanuts and other nuts.



Don't know............................... ❑ 9

LABEL 13: CONFECTIONERY (72-79)

INGREDIENTS SUGAR, FULL CREAM MILK POWDER, COCOA BUTTER,

COCOA MASS, EMULSIFIERS (322, 476),

FLAVOURING. MAY CONTAIN TRACES OF NUTS, EGG

OR SEED.



Don't know............................... ❑ 9

LABEL 14: PIE / PASTIE (8-15)

INGREDIENTS Wheat flour, water, chicken, vegetables (corn, peas,

carrot), reconstituted onion, shortening, food acid

(330), flavour, antioxidant (306), colour (160a),

thickener (1422), textured soy protein, salt, garlic,

flavours, hydrolysed vegetable protein, rice flour,

mineral salts (341, 451), sugar, chilli, ginger, raising

agent (500), herbs, preservative (281), spices,

vegetable powders, yeast extract, emulsifier (481),

maltodextrin, dextrose, flavour enhancer (635), acid

(330), vegetable gums (415, 412), colour (160b).



Don't know ...............................❑ 9


- 16 -

SECTION E Labelling issues

Q31a While trying to identify foods that are suitable for the person(s) with the allergy, are there

any other labelling issues that have caused you concern?


Yes ........................................❑ 1 GO TO Q31b

No ........................................ ❑ 2 GO TO Q32 Q31b If yes, what problems do you encounter when trying to identify foods that are suitable for

the person(s) with an allergy?

PLEASE WRITE IN.

_____________________________________________________________ (18-27)

_____________________________________________________________

_____________________________________________________________

_____________________________________________________________ Q32 Here are a number of problems that people have said they have encountered when

selecting different food products. Please indicate how often, if at all, this has happened to you.


Often happens

Sometimes happens

Seldom happens

Never happens

Don't know

I have seen the very ingredient I need to avoid,

in the actual product, even though it is not listed

as an ingredient on the label............................ ❑ 1............❑ 2 ...........❑ 3 ........... ❑ 4 ........... ❑ 9 (28)

A packaged product I have been using safely for

ages suddenly has a statement saying it contains

the ingredient(s) I need to avoid ...................... ❑ 1............❑ 2 ...........❑ 3 ........... ❑ 4 ........... ❑ 9 (29)

The package I brought home contains something

completely different to what the product label

said ............................................................. ❑ 1............❑ 2 ...........❑ 3 ........... ❑ 4 ........... ❑ 9 (30)

Different sized packages of the same product

have different ingredients listed on them........... ❑ 1............❑ 2 ...........❑ 3 ........... ❑ 4 ........... ❑ 9 (31)

A label on an outside package of a product varies

from an individual package label inside ............. ❑ 1............❑ 2 ...........❑ 3 ........... ❑ 4 ........... ❑ 9 (32)

A reaction occurred from a product that didn't

appear to have the problem ingredient(s) listed

on the label................................................... ❑ 1............❑ 2 ...........❑ 3 ........... ❑ 4 ........... ❑ 9 (33)

Some products have different names on their

label for the ingredient(s) I need to avoid.......... ❑ 1............❑ 2 ...........❑ 3 ........... ❑ 4 ........... ❑ 9 (34)

Sometimes the listed ingredients 'spices' and

'natural flavours' include the ingredient(s) I need

to avoid........................................................ ❑ 1............❑ 2 ...........❑ 3 ........... ❑ 4 ........... ❑ 9 (35)


- 17 -Q33a In general, have you noticed any changes to the way allergens (foods or ingredients that

cause allergies) are listed on food labels in the past twelve months? PLEASE TICK ONE BOX ONLY AND FOLLOW DIRECTION TO NEXT APPLICABLE QUESTION. (36)

Yes .................................. ❑ 1 GO TO Q33b

No ................................... ❑ 2 GO TO Q34

Don't know........................ ❑ 9 GO TO Q34

Q33b If yes, what sorts of things have you noticed? PLEASE WRITE IN.

_______________________________________________________________ (37-46)

_______________________________________________________________

_______________________________________________________________

_______________________________________________________________ Q33c If yes, do the things you have mentioned make it any easier for you to identify products

that do not contain the ingredient(s) of concern? PLEASE TICK ONE BOX ONLY. (47)

Yes, suitable products are now easier to identify ................................................❑ 1 GO TO Q33d

No, the changes I have noted have made no difference to how easy it is to

identify suitable products ....................................................................................❑ 2 GO TO Q34

No, the changes noted have made it harder to identify suitable products ..........❑ 3 GO TO Q33d

Don't know ..........................................................................................................❑ 9 GO TO Q34

Q33d Why was it easier / harder? PLEASE WRITE IN.

_______________________________________________________________ (48-57)

_______________________________________________________________

_______________________________________________________________

_______________________________________________________________ Q34 Are there any other things you'd like to see on food labels? Do you have any suggestions

about how food labels can be improved to make it easier for you to both find products that contain the problem ingredient or locate products that do not contain that ingredient?

PLEASE WRITE IN.

_______________________________________________________________ (58-67)

_______________________________________________________________

_______________________________________________________________

_______________________________________________________________

_______________________________________________________________

_______________________________________________________________

_______________________________________________________________

IF THERE IS NOT ENOUGH SPACE, YOU MAY CONTINUE ON THE INSIDE FRONT COVER.


- 18 -

SECTION F Demographics – main grocery buyer

In order for us to obtain a comprehensive profile of the people surveyed it is important for us to collect some additional demographic information. It would therefore be of great benefit to this survey if you would answer the following additional questions. If you are the person with the serious food allergy, you may have answered a few of the questions previously, however please complete them again. Thank you for your assistance.

Q35 Which of these age groups are you in? PLEASE TICK ONE BOX ONLY.

15-19 years ............................................................. ❑ 1 (68)

20-24 years............................................................. ❑ 2

25-34 years............................................................. ❑ 3

35-44 years............................................................. ❑ 4

45-54 years............................................................. ❑ 5

55-64 years............................................................. ❑ 6

65-74 years............................................................. ❑ 7

75 years or over....................................................... ❑ 8

Q36 What is the highest education level that you have achieved? PLEASE TICK ONE BOX ONLY.

Never attended school............................................... ❑ 1 (69)

Primary school only................................................... ❑ 2

Secondary school up to Form 5................................... ❑ 3

Secondary school up to Form 6 or 7 ........................... ❑ 4

Trade qualifications................................................... ❑ 5

Certificate (non-trade) / diploma................................. ❑ 6

Bachelor degree ....................................................... ❑ 7

Higher qualifications.................................................. ❑ 8

Q37 Which of these statements best describes your annual total household income (before tax)? PLEASE TICK ONE BOX ONLY.

Less than $25,000 .................................................... ❑ 1 (70)

$25,000 to $39,999 .................................................. ❑ 2

$40,000 to $74,999 .................................................. ❑ 3

$75,000 to $100,000 ................................................ ❑ 4

More than $100,000.................................................. ❑ 5 Q38a Please read each of the following descriptions carefully and tick the box which best describes your

household. If none fit your household, tick the bottom box and describe your household to us. PLEASE TICK ONE BOX ONLY.

Single person, living alone ..................................................................... ❑ 1 (71)

Single person, living with one or more children ......................................... ❑ 2

Couple living without children................................................................. ❑ 3

Couple living with one or more children ................................................... ❑ 4

Group home of unrelated adults ............................................................. ❑ 5

Other (Please tick and describe your household) ................................ ❑ 7

__________________________________________________________________________________


- 19 -Q38b If you have children living with you, what are their ages? PLEASE TICK ALL THAT APPLY.

Less than 3 years ............................................... ❑ 1 (72)

3-7 years.......................................................... ❑ 2

8-11 years ........................................................ ❑ 3

12-15 years ...................................................... ❑ 4

16-17 years ...................................................... ❑ 5

18 years and over .............................................. ❑ 6 Q39 Are you descended from a New Zealand Maori or belong to a Pacific Islander ethnic group? FOR

PERSONS OF BOTH MAORI AND PACIFIC ISLAND DESCENT, PLEASE MARK BOTH 'YES' BOXES.

No ................................................................... ❑ 1 (73)

Yes, a NZ Maori descendent................................. ❑ 4

Yes, of Pacific Islander ethnicity ...........................❑ 5

Q40 Which language do you mainly speak at home?

English .............................................................. ❑ 01 (74-76)

Other (PLEASE WRITE IN)................................. ❑ 02

____________________________________ Q41 Please indicate your location. PLEASE TICK ONE BOX ONLY. (77-78)

North Island ........................................❑ 09 South Island ....................................... ❑ 10 Q42 Which of these statements best describes where you live. PLEASE TICK ONE BOX ONLY.

A city .............................................................. ❑ 1 (79)

A large regional centre........................................ ❑ 2

A small town, rural or remote area .......................❑ 3

Q43 Finally, please tick whether you are male or female. PLEASE TICK ONE BOX ONLY.

Male...........................................................❑ 1 (80)

Female .......................................................❑ 2

Thank you very much for your help

Please send back your completed form in the reply paid envelope enclosed (it doesn't need a stamp) to return to us by 30 May, 2003

OFFICE USE

(81)

I ....................... 1

P...................... 2

S...................... 3

.i

QUANTITATIVE CONSUMER RESEARCH ON ALLERGEN LABELLING – C02039

INFORMATION LETTER

PLEASE RETAIN FOR YOUR RECORDS Dear Sir / Madam I am writing to invite you to participate in a survey about the labelling of foods that contain potential allergens, such as peanuts, milk, eggs and fish products. The survey will provide important information about how food labels are used by those who have allergic reactions to foods or ingredients in food products. The Survey The allergen labelling survey will be conducted across New Zealand and Australia, on behalf of Food Standards Australia New Zealand (FSANZ) by NFO Donovan Research Pty Ltd. We intend to gain a better insight into your understanding of the allergen labelling requirements for food products. The information that you may provide us in this survey will assist us to maintain a high standard of public safety in New Zealand and Australia through better labelling of foods. The results of this survey will be published in late 2003 and will be available for download from the FSANZ website. The information that you may provide will remain anonymous and will be treated with strict confidence by NFO Donovan Research. At no stage will you be identified or the information linked to you. Role of FSANZ FSANZ (formerly Australia New Zealand Food Authority) is responsible for protecting the health and safety of the people in New Zealand and Australia through the development of food standards for both countries, and through related functions. We are a bi-national independent statutory authority that develops food standards for composition, labelling and contaminants, including microbiological limits, that apply to all foods produced or imported for sale in New Zealand and Australia. Method of Contacting You This letter has been sent to you directly by the health professional or organisation that selected you to be included in the survey. This is because either you or someone in your household has been diagnosed as being allergic to certain foods or food ingredients. Your contact details have not been revealed to NFO Donovan Research or to FSANZ. If you have contacted NFO Donovan Research directly to participate in this survey, your contact details were destroyed as soon as this questionnaire pack was sent to you. If you are not the main grocery buyer, please pass this questionnaire pack on to the person who does most of the food shopping in your household. Questionnaire Pack Aside from this information letter, in this package you should have also received a questionnaire, a reply paid envelope and two copies of a consent form. If you are completing the survey as the main grocery buyer and are less than 18 years of age, the consent form needs to be signed by your parent or guardian. Please return a signed copy of consent form with your completed questionnaire. The other copy is for your records. If you are over 18 years of age, you do not need to complete the consent form.

55 Blackall St., Barton ACT 2600 Australia PO Box 7186 Canberra BC ACT 2610 Australia Tel + 61 2 6271 2222 Fax +61 2 6271 2278 www.foodstandards.gov.au

Level 4, 108 The Terrace Wellington PO Box 559 Wellington Tel + 64 4 473 9943 Fax + 64 4 473 9855 www.foodstandards.govt.nz


Assistance with the Questionnaire Should you have any questions about the survey or are unsure how to complete the questionnaire, please call NFO Donovan Research 0800 230 012 within New Zealand. You will not be charged for this telephone call unless you call from a mobile phone. Your family members and/or friends can help you complete the questionnaire. You may also ask NFO Donovan Research to provide an interpreter. Further Information You can find information about this survey on the FSANZ website:

http://www.foodstandards.govt.nz. You may also contact FSANZ directly should you require any further information regarding this survey. Our contact details are: Ms Shareen Lata (Evaluation Project Officer), phone +64 4 473 9942 (reception) or e-mail [email protected]. Your Rights If you have any queries or concerns regarding your rights as a participant in this survey, you may wish to contact a Health and Disability Advocate on telephone 0800 555 050 (Northland to Franklin), 0800 377 766 (South Island) or 377 7501 (Christchurch). For Auckland District Health Board Maori Support, please contact Mata Forbes, RGON; Coordinator/Advisor, Maori Health Services, Auckland Hospital, Grafton on phone (09) 307 4949 ext 7292 or mobile 021 348 432. Te Komiti Whakarite at the Christchurch Hospital has supported this survey. Please quote Project Number AKX/02/00/348 for any queries regarding this survey. This study has received ethical approval from the Auckland Ethics Committee on behalf of the Canterbury Ethics Committee. Voluntary Participation By completing the questionnaire you are agreeing to participate in the survey. Please note that you are not obliged to participate in this survey and can withdraw at any time. However, FSANZ will greatly appreciate any information you provide us, as it will help us further improve food standards in New Zealand and Australia. I thank you for your contribution to this valuable survey. Yours sincerely

Dr Marion Healy Chief Scientist


CONSENT FORM ALLERGEN LABELLING SURVEY

(Only to be completed if the main grocery buyer in the household, who is completing the questionnaire is under 18 years of age)

I………………………………………………………………………………………… hereby consent to my child (tamaiti) participate in the above named survey. 1. I have been given clear information (written) about this survey and have been given time to consider whether my

child (tamaiti) should take part. 2. I have also been provided with contact details for NFO Donovan Research should I require assistance with the

questionnaire. I can ask for an interpreter to assist me with survey questionnaire.

3. I understand that I (or my child) may not directly benefit by taking part in this survey.

4. I agree that the information I (or my child) provide in this survey will be published and I (or my child) will not be identified. The information I (or my child) provide will be confidential and anonymous.

5. I understand that my (or my child’s) participation in this survey is voluntary (by choice). I (or my child) can refuse participation in the survey without any consequences to my family (whanau) or me.

6. I understand that there will be no payments made to me (or my child) for taking part in this survey.

7. I have been able to ask NFO Donovan Research questions and all questions have been answered satisfactorily. I was able to ask for a interpreter and the interpreter answered my questions satisfactorily.

8. I am aware that I can contact Food Standards Australia New Zealand (contact details on the information letter) should I require any further information about this survey or a copy of the published report.

9. I am aware that I can also make a complaint regarding this survey. This information is provided in the information letter.

10. I am aware that I should retain one of the copies of the Consent Form and the Information Letter. Signed………………………………………… Date……………… (Parent/Guardian)

Level 4, 108 The Terrace Wellington PO Box 559 Wellington

13 Richardson Street West Perth WA 6005 AUSTRALIA Tel +61 8 9322 2466 Fax +61 2 9481 6781

PLEASE RETURN TO NFO DONOVAN RESEARCH




I………………………………………………………………………………………… hereby consent to my child (tamaiti) participate in the above named survey. 11. I have been given clear information (written) about this survey and have been given time to consider whether my

child (tamaiti) should take part. 12. I have also been provided with contact details for NFO Donovan Research should I require assistance with the

questionnaire. I can ask for an interpreter to assist me with survey questionnaire.

13. I understand that I (or my child) may not directly benefit by taking part in this survey.

14. I agree that the information I (or my child) provide in this survey will be published and I (or my child) will not be identified. The information I (or my child) provide will be confidential and anonymous.

15. I understand that my (or my child’s) participation in this survey is voluntary (by choice). I (or my child) can refuse participation in the survey without any consequences to my family (whanau) or me.

16. I understand that there will be no payments made to me (or my child) for taking part in this survey.

17. I have been able to ask NFO Donovan Research questions and all questions have been answered satisfactorily. I was able to ask for a interpreter and the interpreter answered my questions satisfactorily.

18. I am aware that I can contact Food Standards Australia New Zealand (contact details on the information letter) should I require any further information about this survey or a copy of the published report.

19. I am aware that I can also make a complaint regarding this survey. This information is provided in the information letter.

20. I am aware that I should retain one of the copies of the Consent Form and the Information Letter. Signed……………………………… ………… Date……………… (Parent/Guardian)

Level 4, 108 The Terrace

Wellington

PO Box 559

Wellington

13 Richardson Street West Perth WA 6005 AUSTRALIA Tel +61 8 9322 2466 Fax +61 2 9481 6781

PLEASE RETAIN FOR YOUR RECORDS

QUANTITATIVE CONSUMER RESEARCH ON ALLERGEN LABELLING - QUESTIONNAIRE (AUSTRALIA) C02039

APPENDIX C 1. AUSTRALIAN QUESTIONNAIRE 2. AUSTRALIAN INFORMATION LETTER

3. AUSTRALIAN CONSENT FORM

BenchmarkFood Allergen

Labelling Survey

for

2003

Australia

Welcome to the FSANZ Benchmark Food Allergen Labelling Survey

2003

Food Standards Australia New Zealand (FSANZ) has asked NFO Donovan Research to conduct a survey on its behalf into issues relating to food labelling for people with allergies to certain foods or ingredients. You have been selected for inclusion in the survey because either you or someone else in your family has a food allergy. The survey is mainly about how helpful you find the labelling information that is provided on packaged food and drink products for making suitable food choices. It is not a test of your product knowledge but of how well the food labelling works. Your responses are very important as they will help FSANZ further improve food labelling standards in Australia and New Zealand.

WHO SHOULD COMPLETE THE SURVEY?

The main grocery buyer for the household should complete the survey.

WHAT IF I NEED HELP?

Friends or family members can help you complete the form, or you can ring this Free Call number: 1800 688 122 (Australia).

WHO SHOULD I TALK TO FOR MORE INFORMATION ABOUT THE SURVEY?

You can contact Shareen Lata at FSANZ by phone on (02) 6271 2219 or email [email protected].

WHERE CAN I MAKE A COMPLAINT IF I AM NOT HAPPY ABOUT THE SURVEY?

You may call the Australian Department of Health and Ageing Ethics Committee Secretariat on (02) 6271 4324. Please quote project number 5/2002.

ARE MY ANSWERS CONFIDENTIAL?

This survey has been designed in line with the privacy laws of Australia and New Zealand. The completed questionnaires will remain anonymous. Any information you provide to us will be used for research purposes only.

Note: you may have received this questionnaire from several different sources. If you have, we ask that you complete only one questionnaire.

Please read all the questions carefully and follow the instructions after each question. The instructions are in bold.

Where you see this symbol, there is very important information on whether or not you

need to answer certain questions. Please read the information and follow the instructions.

Your contribution to this survey is valuable. Please answer the questions and send back your completed form to us in the reply paid envelope by 17 April,

2003. You do not need a postage stamp.

.i


- 1 - IF YOU HAVE RECEIVED THIS QUESTIONNAIRE AND ARE NOT THE MAIN GROCERY

BUYER, PLEASE GIVE THIS QUESTIONNAIRE TO THE PERSON(S) WHO MAINLY OR JOINTLY DOES THE FOOD SHOPPING FOR YOUR HOUSEHOLD.

SECTION A Background

Q1 Please tick any of the following statements that are true. YOU MAY NEED TO TICK MORE THAN ONE BOX. (8-11)

I am the main grocery buyer ............................................ ❑ 1

I am jointly responsible for grocery purchases..................... ❑ 2

I have a serious food allergy ............................................. ❑ 3

I am the person to whom the envelope was addressed ......... ❑ 4

Q2 How many people in total in your household have a serious food allergy *? (12-13)

WRITE IN NUMBER OF PEOPLE.

*By serious food allergy we mean a reaction that involves one or more of the following symptoms due to exposure to a particular food or food ingredient (allergens):


IF ONLY ONE PERSON IN YOUR HOUSEHOLD HAS A SERIOUS FOOD ALLERGY OF THE TYPE DESCRIBED, PLEASE GO TO Q5.

Q3 If there is more than one person with a food allergy in your household, please indicate all the food allergies for all members of the household. (14-37)

PLEASE TICK AS MANY BOXES AS APPLY OR WRITE IN THE SPACE PROVIDED.


Milk ...........................................❑ 02 Fish ................................................... ❑ 07

Soy ............................................❑ 03 Shellfish.............................................. ❑ 08


Egg.............................................❑ 05 Sesame Seeds ..................................... ❑ 10


_______________________________ ____________________________________ Q4 What food allergy/allergies, if any, could result in a potentially life threatening reaction to

any person in your household with a food allergy?

PLEASE TICK AS MANY BOXES AS APPLY OR WRITE IN THE SPACE PROVIDED. (38-61)


Milk ...........................................❑ 02 Fish ................................................... ❑ 07

Soy ............................................❑ 03 Shellfish.............................................. ❑ 08


Egg.............................................❑ 05 Sesame Seeds ..................................... ❑ 10


OFFICE USE

WAVE 1 (1)

Country 1-(2)

QNA (3-6)

.i

.i


- 2 -

WE WOULD NOW LIKE YOU TO THINK ABOUT THE PERSON IN YOUR HOUSEHOLD WHO HAS THE MOST SERIOUS ALLERGY TO A SPECIFIC FOOD(S) OR FOOD INGREDIENT(S) AS YOU COMPLETE THESE QUESTIONS.

Q5 The person with the most serious food allergy is … PLEASE TICK ONE BOX ONLY. (62)

Me ................................................................................ ❑ 1

My partner ..................................................................... ❑ 2

My child (for example biological-, foster-, step-, etc) ............ ❑ 3 My parent (for example mum, dad, step-, foster-, etc) ......... ❑ 4 My grandchild (for example biological-, foster-, step-, etc) .... ❑ 5 Other (PLEASE WRITE IN) _____________________________

Q6 What is the sex of the person with the most serious food allergy? PLEASE TICK ONE BOX ONLY.

Male ........................................................❑ 1

............................................................................... (63)

Female.....................................................❑ 2 Q7 What is the age of the person with the most serious food allergy? PLEASE TICK ONE BOX ONLY.

Under age 3 years .....................................❑ 1

3-5 years .................................................❑ 2

............................................................................... (64)

6-12 years................................................❑ 3

13-17 years ..............................................❑ 4

18 – 24 years............................................❑ 5

25 years or more.......................................❑ 6 Q8 What sort(s) of food allergy does the person with the most serious food allergy have?


Peanuts (groundnuts) ................................ ❑ 01

Milk ......................................................... ❑ 02

Soy ......................................................... ❑ 03

Wheat...................................................... ❑ 04

Egg (eg raw or cooked egg white or yolk)...... ❑ 05

Tree nuts (eg cashews, walnuts) .................. ❑ 06

Fish ......................................................... ❑ 07

Shellfish ................................................... ❑ 08

Sulphites (food additives 220-225, 228)........ ❑ 09

Sesame seeds ........................................... ❑ 10

Other (PLEASE WRITE IN) _______________________________________________________________ (8-31) Q9 How was the food allergy first identified for the person with the most serious food allergy?


Had a reaction ............................................................... ❑ 1

..................................................................................................... (32-37)

From parent (s) .............................................................. ❑ 2 From an alternative health practitioner (eg Naturopath) ....... ❑ 3

Worked it out for self ....................................................... ❑ 4 Other (PLEASE WRITE IN)_________________________________

IF MORE THAN ONEPERSON IN HOUSEHOLDHAS A SERIOUS FOODALLERGY, PLEASESELECT ONE PERSONONLY WHENANSWERING Q6 TO Q14.

OFFICE USE

RPT (1-6)

CARD 2 (7)

.i


- 3 -

________________________________________________________



- 4 -Q10 Approximately how long ago was the food allergy first identified for the person with the

most serious food allergy? PLEASE TICK ONE BOX ONLY.

Less than 6 months ago ................................................... ❑ 1

........................................................................................................... (38)

More than 6 months but less than a year ago ...................... ❑ 2 More than a year but less than two years ago...................... ❑ 3 More than two years ago .................................................. ❑ 4 Can't remember.............................................................. ❑ 9


PLEASE TICK ONE BOX ONLY AND FOLLOW DIRECTION TO THE NEXT QUESTION. (39)

Yes...................................................... ❑ 1 GO TO Q11b

No....................................................... ❑ 2 GO TO Q12

Q11b Who made the formal diagnosis for the person with the most serious food allergy? PLEASE TICK ALL BOXES THAT APPLY.

A GP / doctor / medical practitioner ................................... ❑ 1

..................................................................................................... (40-43)

A doctor specialising in allergies ........................................ ❑ 2 A dietitian ...................................................................... ❑ 3

An alternative health practitioner (eg Naturopath) ............... ❑ 4 Other (PLEASE WRITE IN)_________________________________

________________________________________________________


Q11c How was the formal diagnosis made for that person? PLEASE TICK ALL BOXES THAT APPLY.

Skin prick test ................................................................ ❑ 1

..................................................................................................... (44-47)

RAST (Blood test)............................................................ ❑ 2 Elimination diet............................................................... ❑ 3 Other (PLEASE WRITE IN)_________________________________

________________________________________________________

Don't know / can't recall................................................... ❑ 9 EVERYONE ANSWER Q12 Has the person with the most serious food allergy become less allergic since the formal

diagnosis? PLEASE TICK ANY BOXES THAT APPLY.

Reactions are less severe to all food items .......................... ❑ 1

..................................................................................................... (48-53)

Reactions are less severe to some food items...................... ❑ 2 Reactions are less frequent to all food items........................ ❑ 3 Reactions are less frequent to some food items ................... ❑ 4 Is no longer allergic at all ................................................. ❑ 5

No, is still allergic............................................................ ❑ 6 Don't know / haven't tried or tested................................... ❑ 9

Q13a Has the person with the most serious food allergy had a severe allergic reaction since the

allergy was identified?

PLEASE TICK ONE BOX AND FOLLOW DIRECTION TO THE NEXT QUESTION. (54)


- 5 -

Yes.................................................... ❑ 1 GO TO Q13b

No..................................................... ❑ 2 GO TO Q14

Don't know / can't recall....................... ❑ 9 GO TO Q14


- 6 -Q13b If yes, can you please describe the circumstances in which this happened? PLEASE WRITE IN.

_____________________________________________________________ (55-62)

_____________________________________________________________

_____________________________________________________________

SECTION B Managing the allergy

Q14 Which of the following words tell you that the ingredients that the person with the most serious food allergy needs to avoid, may be present in the food product?

PLEASE TICK ALL THE BOXES THAT APPLY. (63-80)

Whey.......................❑ 01 Casein .......................❑ 10 Thickener .............................. ❑ 19

Tofu ........................❑ 02 Albumin .....................❑ 11 Textured vegetable protein ...... ❑ 20

Couscous .................❑ 03 Lactose ......................❑ 12 Tempeh ................................ ❑ 21

Ovalbumin ...............❑ 04 Lecithin......................❑ 13 Starch .................................. ❑ 22

Tamari .....................❑ 05 Cornflour....................❑ 14 Butterfat ............................... ❑ 23

Maltodextrin .............❑ 06 Semolina....................❑ 15 Anchovies..............................❑ 24

Praline .....................❑ 07 Tahini ........................❑ 16 Surimi ................................. ❑ 25

Baker's flour .............❑ 08 Icing sugar mix ...........❑ 17 Marzipan .............................. ❑ 26

Vegetable oil.............❑ 09 Lactalbumin................❑ 18 Polenta .................................❑ 27

Other (PLEASE WRITE IN) ________________________ ____________________________

_______________________ ________________________ ____________________________

WE'D NOW LIKE YOU TO CONSIDER YOUR WHOLE HOUSEHOLD IN ANSWERING THE REMAINING QUESTIONS.

Q15 Considering all the members of your household who have food allergies, as far as you know, how would each person(s) in your household with food allergy/allergies approach eating foods with the following ingredient(s)?

PLEASE TICK ONE BOX FOR EACH OF THE PROBLEM INGREDIENTS FOR YOUR HOUSEHOLD. They try, but can't avoid it completely


They never eat it at all Don't know

Peanuts (groundnuts) .............................. ❑ 1 ..................❑ 2 ................. ❑ 3.................. ❑ 9 (8)

Milk ...................................................... ❑ 1 ..................❑ 2 ................. ❑ 3.................. ❑ 9 (9)

Soy ....................................................... ❑ 1 ..................❑ 2 ................. ❑ 3.................. ❑ 9 (10)

Wheat ................................................... ❑ 1 ..................❑ 2 ................. ❑ 3.................. ❑ 9 (11)

Egg ....................................................... ❑ 1 ..................❑ 2 ................. ❑ 3.................. ❑ 9 (12)

Tree nuts (eg cashews, walnuts) ................ ❑ 1 ..................❑ 2 ................. ❑ 3.................. ❑ 9 (13)

Fish ...................................................... ❑ 1 ..................❑ 2 ................. ❑ 3.................. ❑ 9 (14)

Shellfish ................................................ ❑ 1 ..................❑ 2 ................. ❑ 3.................. ❑ 9 (15)

Sulphites (food additives 220-225, 228) ..... ❑ 1 ..................❑ 2 ................. ❑ 3.................. ❑ 9 (16)

Sesame seeds ........................................ ❑ 1 ..................❑ 2 ................. ❑ 3.................. ❑ 9 (17)

OFFICE USE

RPT (1-6)

CARD 4 (7)

.i


- 7 -

Other (PLEASE WRITE IN)

___________________________________❑ 1 ..................❑ 2 ................. ❑ 3.................. ❑ 9 (18)

___________________________________❑ 1 ..................❑ 2 ................. ❑ 3.................. ❑ 9 (19)

Q16 As the person who mainly buys the groceries, how often do you do the following things to help manage the food allergy/allergies of all the persons in your household?


Always Often Occasionally Never Don't know

Buy unprocessed foods where possible ........ ❑ 1 ........... ❑ 2........... ❑ 3............❑ 4 ............. ❑ 9 (20)

Buy foods in sealed packages where

possible ................................................. ❑ 1 ........... ❑ 2........... ❑ 3............❑ 4 ............. ❑ 9 (21)

Read food labels carefully.......................... ❑ 1 ........... ❑ 2........... ❑ 3............❑ 4 ............. ❑ 9 (22)

Contact the food manufacturer about

what's in a food ....................................... ❑ 1 ........... ❑ 2........... ❑ 3............❑ 4 ............. ❑ 9 (23)

Buy loose or bulk foods............................. ❑ 1 ........... ❑ 2........... ❑ 3............❑ 4 ............. ❑ 9 (24)

Check food lists provided by allergy

support group(s)...................................... ❑ 1 ........... ❑ 2........... ❑ 3............❑ 4 ............. ❑ 9 (25)

Buy same brand of product (s) known

from past experience to be allergy free ....... ❑ 1 ........... ❑ 2........... ❑ 3............❑ 4 ............. ❑ 9 (26)

Q17a Are there any broad product categories (eg dairy foods, bread, etc) for which you

particularly need to read labels because the majority of them are likely to cause problems for the person(s) with the allergy/allergies?

PLEASE TICK ONE BOX ONLY AND FOLLOW DIRECTION TO THE NEXT APPLICABLE QUESTION. (28)

Yes, I have to check some product categories ........... ❑ 1 GO TO Q17b

No, I have to check all product categories ................ ❑ 2 GO TO Q18

Don't know / can't recall / not applicable.................. ❑ 9 GO TO Q18

Q17b If yes, please tick which of the following broad product categories you check for that reason.

TICK ALL BOXES THAT APPLY. (29-78)

Dairy products .................. ❑ 01 Canned foods ..................❑ 14 Breakfast cereals ............❑ 26

Vegetable oils ................... ❑ 02 Breads ..........................❑ 15 Pasta .............................❑ 27

Margarines ....................... ❑ 03 Mayonnaises ..................❑ 16 Noodles..........................❑ 28

Butter / dairy spreads ........ ❑ 04 Frozen foods ...................❑ 17 Rice ..............................❑ 29

Cordials ........................... ❑ 05 Spreads .........................❑ 18 Sweet biscuits .................❑ 30

Soft drinks ....................... ❑ 06 Fruit juices......................❑ 19 Confectionery..................❑ 31

Savoury biscuits/crackers ... ❑ 07 Savoury snack foods ........❑ 20 Infant formula.................❑ 32

Baby foods ....................... ❑ 08 Soups ............................❑ 21 Pre-prepared meals..........❑ 33

Smoked / cured meats ....... ❑ 09 Cakes/ muffins/ pastries ..❑ 22 Chocolates .....................❑ 34

Sauces (eg chilli, BBQ,

Worcestershire)................. ❑ 10

Muesli ............................❑ 23

Cook / simmer / pasta

sauces .......................... ❑ 35

OFFICE

USE

27=∅


- 8 -

Sausages ........................ ❑ 11 Fish and fish products.......❑ 24 Eggs and egg products .....❑ 36

Alcoholic drinks................. ❑ 12 Ice cream .......................❑ 25 Desserts.........................❑ 37

Dried fruit ........................ ❑ 13 Other(PLEASE WRITE IN)

____________________ __________________ ___________________

____________________ __________________ ___________________

SECTION C Knowledge and information

WE'D LIKE YOU TO NOW THINK ABOUT WHEN A SERIOUS FOOD ALLERGY FIRST BECAME AN ISSUE IN YOUR HOUSEHOLD.

Q18 When a serious food allergy first became an issue in your household, where did you get the relevant information about what food(s) and food ingredient(s) needed to be avoided? PLEASE TICK ALL BOXES THAT APPLY.

From a GP / doctor / medical practitioner....................................................... ❑ 01 (8-27)

From a doctor specialising in allergies ........................................................... ❑ 02

From a dietitian ......................................................................................... ❑ 03

From parent(s) ......................................................................................... ❑ 04

From an allergy support group ..................................................................... ❑ 05

From an alternative health practitioner (ie like a naturopath, iridologist, etc) ...... ❑ 06

From book(s)............................................................................................. ❑ 07

From the web / Internet .............................................................................. ❑ 08

From a friend / acquaintance ....................................................................... ❑ 09

Other (PLEASE WRITE IN) ______________________________________________

___________________________________________________________________

___________________________________________________________________

___________________________________________________________________

Don't know / can't recall..............................................................................❑ 99 Q19a When a serious food allergy was first identified, was it easy or difficult to get the

information you needed to help you avoid the foods of concern?


It was easy to find out what foods needed to be avoided ............. ❑ 1 GO TO Q19b

It was difficult to find out what foods needed to be avoided ......... ❑ 2 GO TO Q19b

Don't know / can't recall ......................................................... ❑ 9 GO TO Q20a Q19b What made it easy / difficult? PLEASE WRITE IN.

____________________________________________________________ (29-36)

____________________________________________________________

____________________________________________________________

____________________________________________________________

OFFICE USE

RPT (1-6)

CARD 3 (7)

.i


- 9 -Q20a Were you shown at any time how to identify the ingredient(s) of concern, using food

labels? PLEASE TICK ONE BOX ONLY AND FOLLOW DIRECTION TO NEXT APPLICABLE QUESTION. (37)

Yes............................................................❑ 1 GO TO Q20b

No.............................................................❑ 2 GO TO Q21

Don't know / can't recall...........................❑ 9 GO TO Q21

Q20b If you were shown how to identify the ingredient(s) of concern when using food labels, who provided this assistance?

PLEASE TICK ALL BOXES THAT APPLY.

My GP / doctor / medical practitioner .............................. ❑ 01 (38-50)

A doctor specialising in allergies ..................................... ❑ 02

A dietitian ................................................................... ❑ 03

An alternative health practitioner.................................... ❑ 04

An allergy support group ............................................... ❑ 05

A friend/acquaintance ................................................... ❑ 06

Parent(s) ................................................................... ❑ 07

Other (PLEASE WRITE IN) ____________________________

_________________________________________________

_________________________________________________

Don't know / can't recall................................................❑ 99

Q21a Have you joined any group that provides information about food allergies?


Yes..................................................❑ 1 GO TO Q21b

No ...................................................❑ 2 GO TO Q22

Don't know / can't recall.................❑ 9 GO TO Q22

Q21b What is the name of the group you joined?

PLEASE WRITE IN.

____________________________________________________________ (79-84)

____________________________________________________________


- 10 -

SECTION D Food labels

Q22 Here are a number of things people have said about selecting food products. Please tell me how strongly you agree or disagree with each statement.


Strongly agree

Tend to agree

Neither agree nor

disagree

Tend to disagree

Strongly disagree

Don't know

I've always been able to find any information I

need on a food or drink label ..............................❑ 1 .......❑ 2 ...... ❑ 3....... ❑ 4....... ❑ 5 ....... ❑ 9 (8)

When I read the labels on food products, I just

focus on one or two key things, such as the

levels of fat or if there are preservatives ..............❑ 1 .......❑ 2 ...... ❑ 3....... ❑ 4....... ❑ 5 ....... ❑ 9 (9)

Generally speaking, it's easy to understand and

use the information on food labels .......................❑ 1 .......❑ 2 ...... ❑ 3....... ❑ 4....... ❑ 5 ....... ❑ 9 (10)

I find some information on food labels really

useful or important ...........................................❑ 1 .......❑ 2 ...... ❑ 3....... ❑ 4....... ❑ 5 ....... ❑ 9 (11)

It's hard to tell which parts of the label are

advertising and which are standard information

manufacturers have to put on .............................❑ 1 .......❑ 2 ...... ❑ 3....... ❑ 4....... ❑ 5 ....... ❑ 9 (12)

I don't have enough time to read food labels

when I'm shopping, even if I wanted to................❑ 1 .......❑ 2 ...... ❑ 3....... ❑ 4....... ❑ 5 ....... ❑ 9 (13)

I'm very interested in food label information ........❑ 1 .......❑ 2 ...... ❑ 3....... ❑ 4....... ❑ 5 ....... ❑ 9 (14) Q23 When buying packaged foods in general, how often do you look at the food labels? PLEASE TICK ONE BOX ONLY. (15)

Only when I buy a product for the first time.................. ❑ 4

Only occasionally when I buy a product........................ ❑ 2

Most of the times I buy a product................................ ❑ 3

Every time I buy a product ......................................... ❑ 4

Can't say / Don't know ..............................................❑ 9 Q24 How much do you feel you can trust the information that is given on food labels? Please

give an overall assessment. PLEASE TICK ONE BOX ONLY.

I completely trust what the labels say.......................... ❑ 1 (16)

I'm pretty sure I can trust what the labels say .............. ❑ 2

I'm not at all sure whether to trust the labels or not ...... ❑ 3

Can't say / Don't know ..............................................❑ 9

OFFICE USE

RPT (1-6)

CARD 5 (7)


- 11 -Q25 In general, when reading food labels because of concerns about allergens, how often are

you unsure about food items or particular ingredients? PLEASE TICK ONE BOX ONLY AND FOLLOW DIRECTION TO THE NEXT QUESTION. (17)

Always unsure............................ ❑ 1 GO TO Q26

Often unsure.............................. ❑ 2 GO TO Q26

Sometimes unsure ...................... ❑ 3 GO TO Q26

Never unsure ............................. ❑ 4 GO TO Q27a

Don't know ................................❑ 9 GO TO Q27a Q26 If you are unsure about what is written in the ingredient list, which of the following do

you do? PLEASE TICK ALL BOXES THAT APPLY.

Avoid using / eating the food ..............................................................................................❑ 01 (18-27)

Ring the manufacturer and ask ...........................................................................................❑ 02

Ring your dietitian or doctor................................................................................................❑ 03

Ring a support group...........................................................................................................❑ 04

Ring a friend........................................................................................................................❑ 06

Try a small amount / give a small amount to the person with the allergy .........................❑ 07

Eat the food anyway / give the food to the person with the allergy....................................❑ 08

Don't know ..........................................................................................................................❑ 99

Other (PLEASE WRITE IN) _____________________________________________________

__________________________________________________________________________

Q27a Consider the statement 'may contain traces of …' which might appear on a product label. If you had an allergy to the particular ingredient mentioned, how useful is this statement to you?









Q27b What would you do if a label on a product said it may contain traces of … [the ingredient you are allergic to]?


Always avoid ................................ ❑ 1 (29)


Always use................................... ❑ 3



- 12 -Q28a Now consider the statement 'made in the same premises as products containing …'? If

you had an allergy to the particular ingredient mentioned, how useful is this statement to you?









Q28b What would you do if a label on a product said it was 'made in the same premises as products containing … [the ingredient you are allergic to]'?


Always avoid ................................ ❑ 1 (31)


Always use................................... ❑ 3

Not sure / don't know .................... ❑ 9 Q29a Now consider the statement 'made on the same equipment as products containing …'? If

you had an allergy to the particular ingredient mentioned, how useful is this statement to you? PLEASE TICK ONE BOX ONLY.







Not sure / don't know ............................................................................................. ❑ 9 Q29b What would you do if a label on a product said it was 'made on the same equipment as

products containing … [the ingredient you are allergic to]'? PLEASE TICK ONE BOX ONLY.

Always avoid ................................ ❑ 1 (33)


Always use................................... ❑ 3



- 13 - THIS QUESTION IS MAINLY ABOUT HOW HELPFUL THE LABELLING INFORMATION

PROVIDED ON PACKAGED FOOD AND DRINK PRODUCTS IS FOR IDENTIFYING FOODS THAT ARE SUITABLE FOR THE PEOPLE IN YOUR HOUSEHOLD WITH ALLERGIES. IT IS NOT A TEST OF YOUR PRODUCT KNOWLEDGE BUT OF HOW WELL THE LABELLING WORKS.


❶



LABEL 1: BREAD (34-41) INGREDIENTS UNBLEACHED BAKER’S FLOUR, YEAST, SALT,

VEGETABLE OILS, SOYA FLOUR, EMULSIFIERS (481,

472e), PRESERVATIVE (282), VITAMIN (THIAMIN),

WATER ADDED. NO ARTIFICIAL FLAVOURS.



Don't know............................... ❑ 9

LABEL 2: RYE BREAD (43-50) INGREDIENTS UNBLEACHED BAKER’S FLOUR, YEAST, RYE MEAL, RYE

FLOUR, VEGETABLE OILS, SALT, GLUTEN, VINEGAR,

SOYA FLOUR, SEMOLINA, EMULSIFIERS (471, 481),

VITAMIN (THIAMIN), WATER ADDED.



Don't know............................... ❑ 9

LABEL 3: CHEESE (52-59) INGREDIENTS Soy extract, vegetable oils, casein, sea salt, mineral

salt (339), food acid, flavour, colour (annatto,

tumeric), water added.



Don't know............................... ❑ 9

.i


- 14 -

❶



LABEL 4: MAYONNAISE (61-68) INGREDIENTS SUGAR, VINEGAR, VEGETABLE OIL, THICKENER

(1422), SALT, EGG, MUSTARD, VEGETABLE GUM

(415), MILK SOLIDS NON-FAT, COLOURS (101, 160A),

ANTIOXIDANT (320), WATER ADDED.



Don't know............................... ❑ 9

LABEL 5: SPREAD (70-77)

INGREDIENTS SUGAR, VEGETABLE OILS, HAZELNUTS, SKIM MILK

POWDER, LOW FAT COCOA, EMULSIFIER, WATER

ADDED.



Don't know............................... ❑ 9

LABEL 6: SOY MILK (8-15)

INGREDIENTS WATER, SOY PROTEIN ISOLATE, SUNFLOWER OIL,

MALTODEXTRIN, SUGAR, MINERAL SALTS (339, 340,

509, 529), FOOD ACIDS (332, 338), VITAMINS

(VITAMINS A, B2, B12).



Don't know............................... ❑ 9

LABEL 7: MARGARINE (17-24)

INGREDIENTS Sunflower oil, vegetable oils, water, salt, milk solids,

emulsifiers (471), natural food acid, preservative

(202), natural colours, vitamins (a, d), flavour.



Don't know............................... ❑ 9

LABEL 8: DRINK (26-33)

INGREDIENTS SUGAR, MALTODEXTRIN, COCOA, WHEY POWDER,

BARLEY AND MALT EXTRACT, MINERALS (CALCIUM

PHOSPHATE, IRON PYROPHOSPATE), VITAMINS (A,

B1, B2, D3, NIACIN). ALL NATURAL INGREDIENTS,

NO ARTIFICIAL COLOURS OR FLAVOURS.



Don't know............................... ❑ 9

LABEL 9: MARZIPAN (35-43)

INGREDIENTS Sugar, almonds, glucose syrup, glucose.



Don't know............................... ❑ 9

OFFICE USE

RPT (1-6)

CARD 6 (7)


- 15 -

❶



OFFICE USE

RPT (1-6)

CARD 7 (7)


INGREDIENTS VINEGAR, MOLASSES, SUGAR, SALT, ANCHOVIES,

TAMARINDS, SHALLOTS, GARLIC, SPICES,

FLAVOURINGS, WATER ADDED.



Don't know ............................... ❑ 9


INGREDIENTS WATER, SUGAR, REHYDRATED VEGETABLES, PEANUT

BUTTER, RECONSTITUTED LEMON JUICE,

DESSICATED COCONUT, HYDROLYSED VEGETABLE

PROTEIN, FOOD ACID (260), SALT, SPICES, SOY

SAUCE, EMULSIFIER, VEGETABLE GUMS.



Don't know ............................... ❑ 9

LABEL 12: MUESLI BAR (63-70)

INGREDIENTS Oats, glucose syrup, sugar, fruit, vegetable oil, puffed

cereal, rolled wheat, humectant, roasted almonds,

honey, desiccated coconut, skim milk powder, natural

emulsifier, flavour, food acid, natural colour. May

contain traces of peanuts and other nuts.



Don't know............................... ❑ 9

LABEL 13: CONFECTIONERY (72-79)

INGREDIENTS SUGAR, FULL CREAM MILK POWDER, COCOA BUTTER,

COCOA MASS, EMULSIFIERS (322, 476),

FLAVOURING. MAY CONTAIN TRACES OF NUTS, EGG

OR SEED.



Don't know............................... ❑ 9

LABEL 14: PIE / PASTIE (8-15)

INGREDIENTS Wheat flour, water, chicken, vegetables (corn, peas,

carrot), reconstituted onion, shortening, food acid

(330), flavour, antioxidant (306), colour (160a),

thickener (1422), textured soy protein, salt, garlic,

flavours, hydrolysed vegetable protein, rice flour,

mineral salts (341, 451), sugar, chilli, ginger, raising

agent (500), herbs, preservative (281), spices,

vegetable powders, yeast extract, emulsifier (481),

maltodextrin, dextrose, flavour enhancer (635), acid

(330), vegetable gums (415, 412), colour (160b).



Don't know ...............................❑ 9


- 16 -

SECTION E Labelling issues

Q31a While trying to identify foods that are suitable for the person(s) with the allergy, are there

any other labelling issues that have caused you concern?


Yes ........................................❑ 1 GO TO Q31b

No ........................................ ❑ 2 GO TO Q32

Q31b If yes, what problems do you encounter when trying to identify foods that are suitable for

the person(s) with an allergy?

PLEASE WRITE IN.

_____________________________________________________________ (18-27)

_____________________________________________________________

_____________________________________________________________

_____________________________________________________________ Q32 Here are a number of problems that people have said they have encountered when

selecting different food products. Please indicate how often, if at all, this has happened to you.


Often happens

Sometimes happens

Seldom happens

Never happens

Don't know

I have seen the very ingredient I need to avoid,

in the actual product, even though it is not listed

as an ingredient on the label............................ ❑ 1............❑ 2 ...........❑ 3 ........... ❑ 4 ........... ❑ 9 (28)

A packaged product I have been using safely for

ages suddenly has a statement saying it contains

the ingredient(s) I need to avoid ...................... ❑ 1............❑ 2 ...........❑ 3 ........... ❑ 4 ........... ❑ 9 (29)

The package I brought home contains something

completely different to what the product label

said ............................................................. ❑ 1............❑ 2 ...........❑ 3 ........... ❑ 4 ........... ❑ 9 (30)

Different sized packages of the same product

have different ingredients listed on them........... ❑ 1............❑ 2 ...........❑ 3 ........... ❑ 4 ........... ❑ 9 (31)

A label on an outside package of a product varies

from an individual package label inside ............. ❑ 1............❑ 2 ...........❑ 3 ........... ❑ 4 ........... ❑ 9 (32)

A reaction occurred from a product that didn't

appear to have the problem ingredient(s) listed

on the label................................................... ❑ 1............❑ 2 ...........❑ 3 ........... ❑ 4 ........... ❑ 9 (33)

Some products have different names on their

label for the ingredient(s) I need to avoid.......... ❑ 1............❑ 2 ...........❑ 3 ........... ❑ 4 ........... ❑ 9 (34)


- 17 -

Sometimes the listed ingredients 'spices' and

'natural flavours' include the ingredient(s) I need

to avoid........................................................ ❑ 1............❑ 2 ...........❑ 3 ........... ❑ 4 ........... ❑ 9 (35)

Q33a In general, have you noticed any changes to the way allergens (foods or ingredients that cause allergies) are listed on food labels in the past twelve months?


Yes .................................. ❑ 1 GO TO Q33b

No ................................... ❑ 2 GO TO Q34

Don't know........................ ❑ 9 GO TO Q34

Q33b If yes, what sorts of things have you noticed? PLEASE WRITE IN.

_______________________________________________________________ (37-46)

_______________________________________________________________

_______________________________________________________________

_______________________________________________________________ Q33c If yes, do the things you have mentioned make it any easier for you to identify products

that do not contain the ingredient(s) of concern? PLEASE TICK ONE BOX ONLY. (47)

Yes, suitable products are now easier to identify ................................................❑ 1 GO TO Q33d

No, the changes I have noted have made no difference to how easy it is to

identify suitable products ....................................................................................❑ 2 GO TO Q34

No, the changes noted have made it harder to identify suitable products ..........❑ 3 GO TO Q33d

Don't know ..........................................................................................................❑ 9 GO TO Q34

Q33d Why was it easier / harder? PLEASE WRITE IN.

_______________________________________________________________ (48-57)

_______________________________________________________________

_______________________________________________________________

_______________________________________________________________ Q34 Are there any other things you'd like to see on food labels? Do you have any suggestions

about how food labels can be improved to make it easier for you to both find products that contain the problem ingredient or locate products that do not contain that ingredient?

PLEASE WRITE IN.

_______________________________________________________________ (58-67)

_______________________________________________________________

_______________________________________________________________

_______________________________________________________________


- 18 -

_______________________________________________________________

_______________________________________________________________

_______________________________________________________________

_______________________________________________________________

IF THERE IS NOT ENOUGH SPACE, YOU MAY CONTINUE ON THE INSIDE FRONT COVER.

SECTION F Demographics – main grocery buyer

In order for us to obtain a comprehensive profile of the people surveyed it is important for us to collect some additional information about your household. It would therefore be of great benefit to this survey if you would answer the following additional questions. If you are the person with the serious food allergy, you may have answered a few of the questions previously, however please complete them again. Thank you for your assistance.

Q35 Which of these age groups are you in? PLEASE TICK ONE BOX ONLY.

15-19 years ............................................ ❑ 1 (68)

20-24 years ............................................ ❑ 2

25-34 years ............................................ ❑ 3

35-44 years ............................................ ❑ 4

45-54 years ............................................ ❑ 5

55-64 years ............................................ ❑ 6

65-74 years ............................................ ❑ 7

75 years or over ......................................❑ 8

Q36 What is the highest education level that you have achieved? PLEASE TICK ONE BOX ONLY.

Never attended school .............................. ❑ 1 (69)

Primary school only.................................. ❑ 2

Secondary school up to Year 10 ................. ❑ 3

Secondary school up to Year 11 or 12 ......... ❑ 4

Trade qualifications .................................. ❑ 5

Certificate (non-trade) / diploma................ ❑ 6

Bachelor degree....................................... ❑ 7

Higher qualifications................................. ❑ 8

Q37 Which of these statements best describes your annual total household income (before tax)?


Less than $25,000 ................................... ❑ 1 (70)

$25,000 to $39,999 ................................. ❑ 2

$40,000 to $74,999 ................................. ❑ 3

$75,000 to $100,000................................ ❑ 4

More than $100,000................................. ❑ 5


- 19 -Q38a Please read each of the following descriptions carefully and tick the box which best

describes your household. If none fit your household, tick the bottom box and describe your household to us.


Single person, living alone.............................................. ❑ 1 (71)

Single person, living with one or more children.................. ❑ 2

Couple living without children ......................................... ❑ 3

Couple living with one or more children ............................ ❑ 4

Group home of unrelated adults ...................................... ❑ 5

Other (PLEASE TICK AND DESCRIBE YOUR HOUSEHOLD).... ❑ 7

__________________________________________________________________________

Q38b If you have children living with you, what are their ages? PLEASE TICK ALL THAT APPLY.

Less than 3 years......................................... ❑ 1 (72)

3-7 years.................................................... ❑ 2

8-11 years .................................................. ❑ 3

12-15 years ................................................ ❑ 4

16-17 years ................................................ ❑ 5

18 years and over ........................................ ❑ 6

Q39 Are you of Aboriginal or Torres Strait Islander origin? FOR PERSONS OF BOTH ABORIGINAL AND TORRES STRAIT ISLANDER ORIGIN, PLEASE

MARK BOTH 'YES' BOXES.

No ............................................................. ❑ 1 (73)

Yes, Aboriginal............................................. ❑ 2

Yes, Torres Strait Islander ............................. ❑ 3

Q40 Which language do you mainly speak at home?

English ...................................................... ❑ 01 (74-76)

Other (PLEASE WRITE IN) ..................................

_______________________________________

Q41 Please indicate your location. PLEASE TICK ONE BOX ONLY. (77-78)

ACT...........................❑ 01 New South Wales .............. ❑ 02 Northern Territory ......... ❑ 03

South Australia ...........❑ 04 Tasmania ......................... ❑ 05 Queensland ................. ❑ 06

Victoria ......................❑ 07 Western Australia .............. ❑ 08

Q42 Which of these statements best describes where you live. PLEASE TICK ONE BOX ONLY.

A city ........................................................ ❑ 1 (79)

A large regional centre.................................. ❑ 2

A small town, rural or remote area .................❑ 3

Q43 Finally, please tick whether you are male or female. PLEASE TICK ONE BOX ONLY.

Male...........................................................❑ 1 (80)

Female .......................................................❑ 2


- 20 -

Thank you very much for your help

Please send back your completed form in the reply paid envelope enclosed (it doesn't need a stamp) to return to NFO Donovan

Research by 17 April, 2003

.iOFFICE USE

(81)

I .......................1

P......................2

S......................3

C02039:INFORMATION LETTER AUST

55 Blackall St., Barton ACT 2600 Australia PO Box 7186 Canberra BC ACT 2610 Australia Tel + 61 2 6271 2222 Fax +61 2 6271 2278

Level 4, 108 The Terrace Wellington PO Box 559

Wellington Tel + 64 4 473 9943

Fax + 64 4 473 9855

SURVEY INFORMATION PLEASE RETAIN FOR YOUR RECORDS

Dear Sir / Madam I am writing to invite you to participate in a survey about the labelling of foods that contain potential allergens, such as peanuts, milk, eggs and fish products. The survey will provide important information about how food labels are used by those who have allergic reactions to foods or ingredients in food products. The Survey The allergen labelling survey will be conducted in all the Australian States and Territories, and in New Zealand, on behalf of Food Standards Australia New Zealand (FSANZ) by NFO Donovan Research Pty Ltd. We intend to gain a better insight into your understanding of the allergen labelling requirements for food products. The information that you may provide us in this survey will assist us to maintain a high standard of public safety in Australia and New Zealand. The results of this survey will be published in late 2003 and will be available for download from the FSANZ website. The information that you may provide will remain anonymous and will be treated with strict confidence by NFO Donovan Research. At no stage will you be identified or the information linked to you. Role of FSANZ FSANZ (formerly Australia New Zealand Food Authority) is responsible for protecting the health and safety of the people in Australia and New Zealand through the development of food standards for both countries, and through related functions. We are a bi-national independent statutory authority that develops food standards for composition, labelling and contaminants, including microbiological limits, that apply to all foods produced or imported for sale in Australia and New Zealand. Method of Contacting You This letter has been sent to you directly by the health professional or organisation that selected you to be included in the survey. This is because either you or someone in your household has been diagnosed as being allergic to certain foods or food ingredients. Your contact details have not been revealed to NFO Donovan Research or to FSANZ. If you have contacted NFO Donovan Research directly to participate in this survey, your contact details were destroyed as soon as this questionnaire pack was sent to you. If you are not the main grocery buyer, please pass the questionnaire pack on to the person who does most of the food shopping in your household.

C02039:INFORMATION LETTER AUST

Questionnaire Pack Aside from this information letter, in this package you should also have received a questionnaire, a reply paid envelope and two copies of a consent form. If you are completing the survey as the main grocery buyer and are less than 18 years of age, the consent form needs to be signed by your parent or guardian. Please return the signed consent form with your completed questionnaire. The other copy is for your records. If you are over 18 years of age, you do not need to complete the consent form. Assistance with the Questionnaire Should you have any questions about the survey or are unsure how to complete the questionnaire, please call NFO Donovan Research on 1800 688 122 within Australia. You will not be charged for this phone call unless you call from a mobile phone. Your family members and/or friends can help you complete the questionnaire. Further Information You can find information about this survey on the FSANZ website:

http://www.foodstandards.gov.au. You may also contact FSANZ directly should you require any further information regarding this survey. Our contact details are: Ms Shareen Lata (Evaluation Project Officer), phone +61 2 6271 2219 or e-mail [email protected]. Your rights If you have any queries or concerns regarding your rights as a participant in this survey, you may wish to contact the Commonwealth Department of Health and Ageing Ethics Committee secretariat by phone on +61 2 6271 4324 or by post MDP 66, GPO Box 9848, Canberra ACT 2601, Australia. Please quote Project Number 5/2002. Voluntary Participation Please note that you are not obliged to participate in this survey. However, FSANZ will greatly appreciate any information you may provide us, as it will help us further improve food standards in Australia and New Zealand. I thank you for your contribution in this valuable survey. Yours sincerely

Dr Marion Healy Chief Scientist

C02039:CONSENT FORM AUST

55 Blackall Street P O Box 7186 Canberra BC ACT 2610 AUSTRALIA Tel +61 2 6271 2222 Fax +612 6271 2278 www.foodstandards.gov.au

13 Richardson Street West Perth WA 6005 AUSTRALIA Tel +61 8 9322 2466 Fax +61 2 9481 6781 www.nfodonovan.com.au



I………………………………………………………………………………………… hereby consent to my child participate in the above named survey. 1) I have been given clear information (written) about this survey and have been given time

to consider whether my child should take part. 2) I have also been provided with contact details for NFO Donovan Research should I

require assistance with the questionnaire. 3) I understand that I (or my child) may not directly benefit by taking part in this survey. 4) I agree that the information I provide in this survey will be published and I (or my child)

will not be identified. The information I provide will be confidential and anonymous. 5) I understand that my (or my child’s) participation in this survey is voluntary (by choice).

I (or my child) can refuse participation in the survey without any consequences to my family or me.

6) I understand that there will be no payments made either to me (or my child) for taking

part in this survey. 7) I have been able to ask NFO Donovan Research questions and all questions have been

answered satisfactorily. 8) I am aware that I can contact Food Standards Australia New Zealand (contact details on

the information letter) should I require any further information about this survey or a copy of the published report.

9) I am aware that I can also make a complaint regarding this survey. This information is

provided in the information letter. 10) I am aware that I should retain one of the copies of the Consent Form and the

Information Letter. Signed……………………………… ………… Date……………… (Parent/Guardian) PLEASE RETURN TO

NFO DONOVAN RESEARCH

C02039:CONSENT FORM AUST

55 Blackall Street P O Box 7186 Canberra BC ACT 2610 AUSTRALIA Tel +61 2 6271 2222 Fax +612 6271 2278 www.foodstandards.gov.au

13 Richardson Street West Perth WA 6005 AUSTRALIA Tel +61 8 9322 2466 Fax +61 2 9481 6781 www.nfodonovan.com.au



I………………………………………………………………………………………… hereby consent to my child participate in the above named survey. 11) I have been given clear information (written) about this survey and have been given time

to consider whether my child should take part. 12) I have also been provided with contact details for NFO Donovan Research should I

require assistance with the questionnaire. 13) I understand that I (or my child) may not directly benefit by taking part in this survey. 14) I agree that the information I provide in this survey will be published and I (or my child)

will not be identified. The information I provide will be confidential and anonymous. 15) I understand that my (or my child’s) participation in this survey is voluntary (by choice).

I (or my child) can refuse participation in the survey without any consequences to my family or me.

16) I understand that there will be no payments made either to me (or my child) for taking

part in this survey. 17) I have been able to ask NFO Donovan Research questions and all questions have been

answered satisfactorily. 18) I am aware that I can contact Food Standards Australia New Zealand (contact details on

the information letter) should I require any further information about this survey or a copy of the published report.

19) I am aware that I can also make a complaint regarding this survey. This information is

provided in the information letter. 20) I am aware that I should retain one of the copies of the Consent Form and the

Information Letter. Signed……………………………… ………… Date……………… (Parent/Guardian)

PLEASE RETAIN FOR YOUR RECORDS

QUANTITATIVE CONSUMER RESEARCH ON ALLERGEN LABELLING – APPENDICES C02039

APPENDIX D RECRUITMENT CRITERIA

C02039:RECRUITMENT CRITERIA

FSANZ ALLERGEN LABELLING SURVEY SAMPLING AND MAILOUT INSTRUCTIONS

Dear «Doctor_Contact» Thank you for agreeing to help NFO Donovan Research distribute this survey questionnaire to clients with serious food allergies on behalf of Food Standards Australia New Zealand (FSANZ) The FSANZ allergen labelling survey aims to assess people's awareness, understanding and behaviour in relation to food labels when purchasing food for themselves or for someone in their household who has a serious allergy to food or food ingredients, all of which affect the management of allergies in the household. In this package, you should have received:

• «Sample_size» questionnaire packs for distribution to your clients (plus one for your records), each pack containing;

• Questionnaire • Information letter from FSANZ; • Reply paid envelope; and • Consent form for participants below 18 years of age • «Sample_size» reminder cards for distribution to your clients (plus one for your

records); and • One acknowledgment card to be posted to the NFO Donovan Research advising of

the number of questionnaires posted to your clients and date of postage, with a copy at the end of this sheet for you to retain.

Who should get this questionnaire ?

From your records, can you please identify «Sample_size» clients who are ‘at risk’ of anaphylactic reaction to certain foods or food ingredients and who are currently over 1 year of age. Please select clients who have been seen at the clinic in the past 2 years.

We want to include a broad cross-section of the population who are ‘at risk’ of anaphylactic reactions to food or food ingredients, so that we can assess the effectiveness of labelling for all types of allergies. Please select clients to roughly represent the proportion of each food allergy typically seen at your clinic.

Thus, if for example a third of the clients seen at your clinic have an egg allergy, then that proportion of the total number of questionnaires you have been asked to send out should be sent to clients with an egg allergy, selected at random from your client records from the previous 2 years. If a client has more than one allergy that may cause anaphylaxis, they should be included as part of the sample for the least common allergy seen at your clinic As we recognise that client records will not be standardised across each different medical centre, it is not possible to give detailed instructions about how you can obtain an appropriate sample of clients within the criteria specified. We must leave this to your discretion and professional judgement, however if further direction is required, you can call NFO Donovan Research on the number provided below and we will be happy to discuss it with you.

C02039:RECRUITMENT CRITERIA

The questionnaire is designed to be completed by the main grocery buyer for the household, thus where the client is currently under 18, the questionnaire package should be addressed to the parent or carer, where these details are known. As we recognise that client records will not be standardised across each different medical centre, it is not possible to give detailed instructions about how you can obtain an appropriate sample of clients within the criteria specified. We must leave this to your discretion and professional judgement, however if further direction is required, you can call NFO Donovan Research on the number provided below and we will be happy to discuss it with you.

1. Identify the clients to whom the questionnaire will be sent (as per the criteria above). 2. Prepare 2 address labels for each client. 3. For each client selected, attach 1 address label to a Questionnaire Pack and the other label

to a Reminder Card (retain for 2 weeks). 4. Complete details on the Acknowledgment Card and on the end of this instruction sheet (for

your records). 5. Post Questionnaire Packs to clients. 6. Post the Acknowledgment Card to NFO Donovan Research (note the date of postage on this

sheet). 7. Post Reminder Cards to clients 2 weeks after posting the Questionnaire Packs (note the

date of postage on this sheet).

On receipt of the Acknowledgment Card, a cheque for $10 per questionnaire pack will be posted to you by NFO Donovan Research as a contribution towards the cost of handling. Please nominate on the Acknowledgment Card to whom the cheque should be made out. If you have any queries or difficulties, please call Kate O'Sullivan of NFO Donovan Research on our FREE CALL number 1800 688 122 or (08) 9322 2466. Alternatively, you can contact the FSANZ project manager, Shareen Lata on phone+612 6271 2219 Australia, +64 4 473 9942 (New Zealand Reception), email [email protected]) or the FSANZ Evaluation Coordinator Janis Baines (+612 6217 2234 or [email protected]). We thank you for your assistance in distributing this questionnaire to your clients. Your support is greatly appreciated. Rhonda Zappelli

Senior Project Director NFO Donovan Research

FOR YOUR RECORDS:

Total number of questionnaires mailed out:

Date questionnaires posted: / /2003 Allergies covered: #

Peanut (groundnuts)

Milk

Soy

Wheat

Egg

Tree nuts

Fish

Shellfish

Have you posted the acknowledgment Card posted to:

NFO Donovan Research, 13 Richardson Street, WEST PERTH WA 6005

Sulphites

Sesame seeds

YES ❒

Other

Date Reminder Cards posted: / /2003

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