consumer information materials for diagnostic breast tests: women's views on information and...

Consumer information materials for diagnosticbreast tests: women’s views on informationand their understanding of test results

Heather M Davey BPsych (Hons) MPH (Hons),* Jacqueline Lim BSc (Hons) MPsychol (Clinical)MAPS,� Phyllis N Butow BA (Hons) DipEd M Clin Psych MPH PhD,� Alexandra L Barratt MBBSMPH PhD FAFPHM,§ Nehmat Houssami MBBS (Hons) MPH MEd (Health) FASBP AFCHSE,–and Roberta Higginson**

*Research Assistant, Screening and Test Evaluation Program, School of Public Health, The University of Sydney, �ResearchAssistant, Department of Psychological Medicine, The University of Sydney and Royal North Shore Hospital, �AssociateProfessor, Director, Medical Psychology Research Unit, Department of Psychological Medicine, The University of Sydney and

Royal North Shore Hospital, §Senior Lecturer in Epidemiology, Screening and Test Evaluation Program, School of Public Health,

The University of Sydney, –Research Associate, Screening and Test Evaluation Program, School of Public Health, The University

of Sydney and **Consumer Representative, Breast Cancer Action Group New South Wales, Sydney, Australia

Correspondence

Heather M Davey

Screening and Test Evaluation Program

Room 319A

School of Public Health

Edward Ford Building, A27

The University of Sydney

NSW 2006

Australia

E-mail: [email protected]

Accepted for publication

28 March 2003

Keywords: breast cancer, diagnostictests, information preferences,

mammography

Abstract

Objective To explore women’s views on diagnostic breast test

information and elicit their preferences for this information.

Design In-depth, face-to-face interview.

Setting and Participants Thirty-seven women who had previously

participated in a population-based telephone survey.

Main outcome measure Qualitative thematic analysis.

Results Analysis of interview transcripts revealed information

about: (1) the wide range of information participants wanted about

diagnostic mammography; (2) general reactions to diagnostic breast

test information, including positive and negative reactions, views of

test accuracy information and perceived influences on information

preferences; (3) preferences for information content and presenta-

tion including the need for written information, the meaning of

statistical information, different views on a simple presentation style,

and variation in preferences; and (4) women’s understanding of

diagnostic test results.

Conclusion Women want a range of information about diagnostic

mammography, which is relevant at different times in the decision-

making and testing process. Many women have difficulty interpre-

ting test results.

Introduction

Information is necessary for patient involvement

in decision-making and informed choice.1–3 The

General Medical Council of the UK and the

American College of Physicians recommend that

doctors inform patients of the potential benefits

and harms of screening tests4–5 and treatment4,6

so that they can make an informed decision

about their health-care. While these recommen-

298 � Blackwell Publishing Ltd 2003 Health Expectations, 6, pp.298–311

dations do not explicitly refer to diagnostic tests,

it seems reasonable that they should also apply to

such tests. In addition to information being

necessary for patient involvement in decision-

making, providing pre-test or pre-treatment

information can help prepare patients7 and

reduce anxiety.8–11

Despite the potential benefits of information,

and its importance for informed patient decis-

ion-making, two recent reviews of consumer

information materials on breast tests concluded

that there are major problems with such infor-

mation.12,13 In particular, they found an

emphasis on incidence and relative risk reduc-

tion when mortality, absolute risk reduction and

number needed to treat are more appropriate;13

inconsistent information on benefits;13 inad-

equate information on potential side-effects and

test accuracy;12 and a lack of information on the

post-test probability of disease.12 However, nei-

ther review assessed women’s information needs

with regard to breast tests.

In addition, little is known about women’s

understanding of diagnostic test results. Such

understanding is crucial if women are to use

information about the post-test probability of

disease to make decisions about medical tests. A

search of the published literature revealed only one

study that specifically assessed patient under-

standing of diagnostic test results.14 This study

used vignettes to assess understanding, none of

which included diagnostic tests for breast disease.

These findings are a cause for concern, as a

recent population-based survey by our group

found that the majority of women want an equal

or more active role in decision-making about

diagnostic and screening tests.15 Although

women in the survey expressed a desire for

information about tests including the potential

benefits, side-effects and risks, and test accuracy,

this study, being a telephone survey using a

standardized questionnaire, could not explore

the level of detail women want, their under-

standing of the information or the best way to

present the information.

Thus, we decided to conduct in-depth, face-to-

face interviews with a subsample of women from

the population-based telephone survey to (a)

explore issues associated with information pro-

vision for diagnostic tests; (b) elicit women’s

preferences for the content and presentation of

such information; and (c) assess women’s

understanding of diagnostic test results.

Although the population-based survey15 inclu-

ded information needs and preferences in rela-

tion to both screening and diagnostic tests, we

decided to focus the interviews on diagnostic

breast tests, as little work has been carried out

on women’s information needs for, and under-

standing of, diagnostic breast tests.

Methods

Participants

The sample was taken from women aged 30–

69 years, who had previously participated in the

population survey telephone described above. A

description of the survey sample is provided

elsewhere.15 Participants included women who

had previously undergone breast tests and

women who had not.

Procedure

At the conclusion of the survey,15 interviewers

asked if the woman would be willing to receive a

mailed invitation to an in-depth, face-to-face

interview to find out her views on the best way of

presenting information about diagnostic breast

tests. Two hundred and eleven women (of the

652 surveyed) agreed to this. Women were ran-

domly selected from this list to receive a letter

inviting them to attend an interview at The

University of Sydney. No inducement was

offered but a small fee was paid to cover parking

and/or travel costs. Letters were despatched in

batches of 20, and recruitment stopped when

information redundancy was obtained.

Interview development

The researchers developed the initial interview

script using the available literature and results

from our population-based survey.15 Researchers

with experience in interview design and

Women’s views on information for diagnostic tests, H M Davey et al.

� Blackwell Publishing Ltd 2003 Health Expectations, 6, pp.298–311

299

qualitative research methodology, who were not

involved in the study, reviewed the interview

script. The script was then pilot tested with six

women who had previously participated in the

survey. Following this, the number of categories

of mammography results was changed from five

(normal, benign, indeterminate, suspicious,

malignant) to three (normal, inconclusive and

abnormal). Normal and benign were combined to

normal; indeterminate was renamed inconclusive;

and suspicious and malignant were combined for

abnormal. A breast clinician, experienced in the

diagnosis of breast disease, approved these

combinations and terminology as those com-

monly used in Australia to report the results of

diagnostic breast tests. In addition, a minor

adjustment was made to the question on under-

standing of test accuracy, with women asked to

interpret two test results instead of three.

The final interview script contained semi-

structured questions that elicited information on

desire for pre-decision information about diag-

nostic mammography; preferences for the con-

tent, presentation and timing of information

about mammography; understanding of test

results; and demographic characteristics. Infor-

mation was presented on coloured A4-sized cards.

Pre-decision information

Women were asked, hypothetically, what infor-

mation they would like about diagnostic mam-

mography before making a decision about

whether or not to have it. They were specifically

asked about practical issues, the doctor’s

assessment, side-effects, risks and accuracy of

the test, if they did not identify these issues

without prompting.

Preferences for information about the accuracy

of diagnostic mammography

Women were asked to consider the hypothetical

case of Mary, a 50-year-old women who had

discovered a lump in her breast for the first time.

They were shown six pieces of information about

diagnostic mammograms (pre-test probability of

disease, probability of a normal, inconclusive and

abnormal result; post-test probability of disease

(three cards) and test accuracy, (Fig. 1) and were

asked (as Mary) which pieces of information they

wanted, to rank them in the order of most to least

preferred, and to indicate whether they would

want the information before deciding to have a

mammogram or when receiving their results.

Reasons for their responses were explored. Post-

test probabilities were calculated using a pre-test

probability of 2%, which was derived from sta-

tistics from a diagnostic breast clinic in Sydney,

Australia and published likelihood ratios calcu-

lated from Australian data.16 To elicit prefer-

ences for the presentation of information,

women were shown the same information pre-

sented in four different ways: numerical probab-

ility; qualitative probability labels; combined

numerical and qualitative probability; and 100

faces (Fig. 2). They were asked to rank these in

order of preference and to give their reasons for

this order.

Understanding of test results

To assess women’s understanding of test results,

the scenario was further developed so that Mary

underwent breast biopsy. Women were shown a

card stating the probability of cancer with dif-

ferent fine needle biopsy results and asked to say

how likely cancer was if a biopsy result of no

evidence of cancer and an inconclusive result was

received (Fig. 3). We considered very unlikely to

be the correct interpretation of no evidence of

cancer and either unlikely or likely to be correct

interpretations of an inconclusive result.

Given that the literature has consistently

shown considerable variation in the way people

interpret qualitative labels,17–22 the women were

asked to assign numerical values to each of the

qualitative labels. We took this into account

when assessing whether women truly understood

a no evidence of cancer and an inconclusive result.

To do this, we checked whether the numerical

values of the qualitative labels chosen for the no

evidence of cancer result, and the inconclusive

result included the actual probability of cancer

for that result. For example, suppose we

want to assess a participant’s understanding of

the chance of having breast cancer with a no

evidence of cancer result (Fig. 3). Our participant

interprets this to mean that Mary is unlikely to


Women’s views on information for diagnostic tests, H M Davey et al.300

Figure

1Interviewcardsshowinginformationaboutmammography.


Women’s views on information for diagnostic tests, H M Davey et al. 301

have breast cancer using the qualitative labels

(Fig. 3). Using the analogue scale, she further

tells us that an event is unlikely if there is a 10–

20% chance that it will happen (Fig. 4). The

actual probability of cancer with a no evidence of

cancer result is 0.1% (clearly shown in Fig. 3).

As this lies outside the range of values for the

qualitative label our participant selected, we

Figure 2 Interview cards showing four different ways of presenting the same information.

Figure 3 Interview cards showing the post-test probability of cancer for breast biopsy and qualitative labels.



interpret this to mean that she does not fully

understand the test result.

Demographic characteristics

Women were asked their age, country of birth,

highest level of education and the sources of

health information they generally used. They

were specifically asked whether they obtained

health information from a doctor, the media, the

Internet and books, if they did not mention these

sources without prompting.

Analysis

Frequency counts were used to analyse the

demographic data. Analysis was performed

using SPSS version 10.0 for Windows.23 Data on

region was compiled using the postcode to which

the invitation was sent. One of the authors

(HD), with experience in content analysis, ana-

lysed all of the transcripts using the constant

comparative method.24 This method involves

identifying participant responses and comparing

and contrasting them to identify recurring ideas

and themes. Another author (PB) reviewed the

analysis. These authors then met to discuss the

analysis, with any differences resolved by dis-

cussion. Representative quotes, that illustrate

the identified issues, were selected.

Results

Characteristics of participants

Thirty-seven women completed an interview. A

summary of the demographic characteristics of

the participants is shown in Table 1.

Content analysis of the transcripts

Analysis of the interview transcripts revealed a

wide range of pre-decision information women

wanted about diagnostic mammography; posit-

ive and negative reactions to the provision of

information; preferences for the content and

presentation of information; and participants�understanding of breast biopsy results. There

appeared to be no major differences in the per-

ceptions and preferences of women aged

50 years and older and women younger than

Figure 4 Visual analogue scale used to elicit values for each qualitative label.



50 years, or between women who had undergone

breast tests and those who had not.

1) Types of information wanted

Women nominated a wide range of information

they would like to receive before deciding to

have a diagnostic mammogram. Table 2 shows

the eight categories of information women

wanted, the details they wanted within each

category and whether these details were

prompted or unprompted.

2) General reactions to information about

diagnostic mammography

Analysis of the transcripts revealed four main

themes; (a) positive and (b) negative responses to

information provision; (c) views on information

about the accuracy of diagnostic mammography;

and (d) influences on information preferences.

(a) Positive responses

Information as a coping mechanism

Information provided before a mammogram,

was seen as a coping mechanism by some

women. For them, this information provided

reassurance and hope. In addition, it prepared

them for having the test, for the potential

results and the implications of those results by

facilitating their understanding of the situ-

ation. For these women, the provision of pre-

decision information was necessary, if they

were going to make a good decision. One

woman said:

To see how you stand, what you’re in for, what the

prospect is, otherwise you’re going in with your

eyes closed.

Another said:

I guess to put it into another perspective that even

if you have a lump you don’t have to panic to the

point of falling to pieces.

Some women felt there was no decision to

make about having a mammogram; if they had

a breast lump they would certainly have a

mammogram.

One woman commented that the information

on post-test probability gave her the courage to

have the mammogram. She said:

Yes I do [want information that says the chance of

cancer is 13 out of 100] because it’s not such a high

number.

(b) Negative responses

Jumping the gun

Other women felt that pre-decision or pre-test

information on the meaning of test results was

jumping the gun. Reasons for this view inclu-

ded the belief that such information would

increase the anxiety and fear a woman would

feel having found a lump in her breast; the

perceived lack of relevance of information on

the post-test probability of disease at that

time; and a concern that the information could

falsely reassure women. They felt the potential

consequence of this was a woman refusing a

test because she did not perceive the risk as

serious. For these women, providing informa-

tion about the probability of cancer with dif-

ferent test results would be more useful when

they received the result of their mammogram.

Two women commented:

Table 1 Demographic characteristics of the interview

participants

Characteristic

Interview

participants

n ¼ 37 (%)

General

population women

(age 30-69 years, %)1,2

Age (years)

30-39 6 (16) 33

40-49 6 (16) 30

50-59 16 (43) 21

60-69 9 (24) 17

Education

School only 9 (24) 59

Post school 28 (76) 42

Region

Metropolitan 36 (97) 66

Rural 1 (3) 34

Country of birth

Australia 28 (76) 69

Other 9 (24) 31

1According to Australian Bureau of Statistics census data.25

2Totals may not add to 100 because of rounding.



Table 2 Types of information wanted before deciding to have a diagnostic mammogram

Numbers of times mentioned

Information Unprompted Prompted Total

Doctor’s opinion about the lump

What is the lump? 2 6 8

Is a mammogram necessary? Why? 3 1 4

What is the possible cause of the lump? 2 - 2

Potential benefits

What benefit will a mammogram be? 3 - 3

Potential risks

What are the dangers of having a mammogram? 5 8 13

Will I be exposed to radiation? 4 - 4

Will the mammogram affect the lump? 1 - 1

If it’s a cyst, will it burst? 1 - 1

Possible side-effects

Will the mammogram hurt? 9 10 19

What is the chance of each side-effect? 1 - 1

Will I feel discomfort? 1 - 1

Accuracy

How accurate is a mammogram? 7 13 20

What is the chance it will miss a cancer? 1 - 1

Will the results be definitive enough for action to be taken? 1 - 1

Alternative tests

What other tests can I have? 4 - 4

Could I have an ultrasound first? 2 - 2

Will I need to have other tests after? 2 - 2

Is a biopsy better than a mammogram 1 - 1

Should I have a biopsy at the same time? 1 - 1

Is this the best test to have? 1 - 1

Practical issues

How is a mammogram actually done? 7 3 10

How long will it take? 3 4 7

Where do I go to have it? 1 1 2

What do I need to take with me? 1 1 2

Who conducts the test? 1 - 1

What shouldn’t I wear? 1 - 1

Can I wear talcum powder/deodorant? 1 - 1

Will I need to fast? 1 - 1

How soon can I have it done? 1 - 1

What different machines can be used? 1 - 1

Possible outcomes

What are the possible outcomes? 5 - 5

What is the worst possible outcome? 2 - 2

What will happen if I don’t have it? 1 - 1

What happens if it’s cancer?

What are the treatment options? 4 - 4

Would chemotherapy be required? 2 - 2

What would the prognosis be? 2 - 2

What is the treatment success rate? 2 - 2

How far has the cancer spread? 1 - 1

Will I be able to keep working? 1 - 1

How long will I need to convalesce? 1 - 1

Would there be support (e.g. home help) available? 1 - 1



I think [having that information] terrifies you

more. It worries you more.

The [information about the chance of cancer with

different test results] only makes people worry

unnecessarily, which I think is defeating and I

think will bring people’s health down and they’re

going to start worrying … so therefore it’s unnec-

essary to make them worry to start with.

c) Test accuracy: how much detail?

Almost all of the women interviewed said they

felt anxious upon hearing that mammograms are

not 100% accurate. However, this anxiety was

more evident in those women who had always

assumed that mammograms provide a definitive

answer. These women did not want to know

mammograms are not 100% accurate as they

felt it would cause them to worry that they may

have breast cancer after receiving a normal

result. They expressed a need for certainty in the

diagnosis of their breast symptom and wanted to

know if there was an alternative test, which

would be more accurate.

Most of the women interviewed felt that it was

important for women to know that mammo-

grams are not 100% accurate, as it avoids false

reassurance. However, they differed on just how

much detail should be provided, with some

women wanting statistical information on the

accuracy of diagnostic mammography and oth-

ers wanting only to know that diagnostic mam-

mography is not 100% accurate. One woman

felt that the lack of 100% accuracy was positive,

as it provided hope that an inconclusive or

abnormal result was incorrect.

(d) Influences on information preferences

Use of information depends on the perceived

severity of test side-effects and potential out-

comes.

When asked if and when they would use

information about a test to assist decision-

making, most women said that they would use

information when there was a strong possibility

that the test would have a side-effect. They

considered these tests to be high-risk and wanted

more information about them. One woman said:

If high risk [I] want information, if not high risk,

there’s no need [for information].

They would also use information when

making a decision about a test where the

potential outcome was perceived as serious (e.g.

a cancer diagnosis). One woman said:

I think it’s more important for breast cancer

because it’s cancer, cancer being a deadly word.

Like with cholesterol, cholesterol doesn’t bring up

the emotions that cancer does, so people worry

more [about cancer and] they need more informa-

tion.

Desire for information affected

by the probability of cancer

Women expressed a greater desire for informa-

tion that was positive. In particular, a number of

women said they would not want to know, prior

to the mammogram, that the chance of having

breast cancer with an abnormal result was more

than 95% (Fig. 2). They felt the information was

too negative and would frighten them. One

woman commented:

Table 2 (Continued)

Numbers of times mentioned

Information Unprompted Prompted Total

Results

How long will it take to get the result? 3 - 3

How do they determine if anything is wrong? 2 - 2

Who examines the mammogram? 1 - 1

How do I find out if anything is wrong? 1 - 1

What happens once the result is known? 1 - 1

Cost

Is there a Medicare rebate? 1 - 1



Well I think if I was told that I had a 95 out of a

100 chance that the lump in my breast was cancer,

I don’t think I’d want to know.

3) Preferences for information content

and presentation

Need for written information

Written information was perceived as a useful

resource, given women are likely to be upset,

and therefore unable to take in any or all of the

information their doctor tells them. In addition,

many women felt written information would be

useful in assisting them to explain the situation

and mammography to their partners, family and

friends. One woman said:

I would like something in writing because the thing

is often [when] I’m particularly upset or thrown, I

don’t think clearly and I don’t understand and I’ll

say �yes� but I don’t understand and I want to take

away a sheet of paper which is clear or something

that, you know, that I can read at home in peace

and quiet or can give my sister to read.

Relevance of statistics for an individual

For a small number of women statistical infor-

mation about the probability of a lump being

cancer and the probability of cancer with dif-

ferent test results was irrelevant. They were only

interested in whether or not they had breast

cancer; they were not interested in statistics

about a group of women that did not include

them. One woman said:

I don’t want to know about all the other people.

It’s my body, my cancer, my breast, I want to

know just for me.

Type and detail of information varied between

women and according to time

While there was considerable variation between

women in their preference for type and detail of

information, three main groups were evident.

One group of women wanted only basic infor-

mation, citing a lack of interest in the actual

percentage of people to whom a certain statistic

applied. They were more interested that an event,

for example, test inaccuracy, was possible. A

second group of women wanted very specific

information, citing the reassuring nature of

knowing exactly what was going on. These

women said that they would filter out any infor-

mation they did not like or considered relevant.

The third group of women wanted basic

information to begin with, then more detailed

information at a later time. In particular, these

women were happy to know before making a

decision or undergoing a test, that mammo-

grams are not 100% accurate and to wait to

know the actual post-test probability of disease

until they received their result.

Present the information simply to facilitate

understanding

All of the women interviewed felt that informa-

tion should be presented as simply as possible, as

women consulting about a breast lump are

anxious and already overloaded with informa-

tion. However, what constituted a simple pres-

entation differed among participants. Most

women agreed that the use of mathematical

symbols such as �<� (less than) and �>� (greater

than) should be avoided and that numbers and

percentages should be put in context by attaching

to them a qualitative label, such as likely.

Women were divided in their views on whe-

ther written presentations such as plain text or

pictorial presentations such as faces were easier

to understand. Some women felt that percent-

ages were difficult to understand on their own.

These women preferred percentages in the con-

text of a qualitative label or information pre-

sented in a visual format (100 faces). They felt

the latter made the information easier to

understand, particularly for women with poor

literacy skills.

Preference for written or pictorial presentation

of information

Women were divided in their preference for

information presented as 100 faces, with the

applicable number coloured in (Fig. 2). Some

women felt that the faces made the information

clear and easy to understand. Those women who

disliked the faces, tended to do so because of

their emotional impact. They felt presenting the



information as faces made it confronting and

too sharp. One woman commented:

The little faces, [you] see all these chances, its

scarier, each chance looks like a human being.

4) Women’s understanding of test results

Table 3 shows the number of women who cor-

rectly interpreted two test results. Of particular

concern were the five women who thought that

no evidence of cancer meant that the woman

definitely did not have cancer.

There was considerable variation in the

numerical values women assigned to the qualit-

ative labels. Table 4 shows the value range

assigned to each descriptor. When we took the

variation in numerical values into account, six

women correctly interpreted the no evidence of

cancer result and seven women correctly inter-

preted the inconclusive result (Table 3).

Discussion

General reactions to information about

diagnostic mammography

Guidelines recommend the provision of infor-

mation for informed decision-making about

screening4–5 and treatment4,6 and it appears

reasonable that the same information should be

provided for diagnostic tests. A previous popu-

lation-based survey15 by this group shows that

almost all women want information on the

potential for a false test result and test side-

effects, even when they predict this information

would make them anxious. The current study

provides more detail about the type of informa-

tion wanted on false results and side-effects and

looks, in particular, at information required

about the post-test probability of disease. It was

necessary to ask women in more detail about the

information they wanted before deciding about

having a diagnostic mammogram, as previous

research has shown that patients do not attach

equal importance to all pieces of information

within a category.26 Table 2 clearly shows that

some pieces of information were mentioned more

than others, indicating that more women con-

sidered them important for making their decision

about diagnostic mammography. Some women

who previously had screening mammograms had

to be prompted more than other women about

what information they would want before deci-

ding about having a diagnostic mammogram.

This was particularly true for practical issues,

such as what actually happens when one has a

mammogram and how long it takes, on which

these women were already knowledgeable.

Of particular interest in this study is the

finding that many women do not want infor-

mation on the post-test probability of breast

cancer when deciding whether they want to have

a mammogram to investigate a breast lump.

They would prefer to have this information

when receiving their mammogram result and

would use it to interpret that result. There

appears to be, therefore, differences in the way

medical professionals and lay people make

decisions about medical tests. Doctors use

information about test characteristics, such as

likelihood ratios to estimate the post-test prob-

ability of disease, to assess whether there is any

value in referring a patient for a diagnostic test,

given their pre-test probability of disease. The

fact that most women in this study did not want

this information until they received their results

Table 4 Range of values (%) assigned to each qualitative

label

Qualitative label Lower value Upper value

Definitely not 0 10

Very unlikely 0 30

Unlikely 0 90

Likely 15 100

Almost certainly 35 100

Definitely 50 100

Table 3 Women’s understanding of two breast biopsy results

Result

Number of women who

answered correctly (n ¼ 37)

Overall

Taking descriptor

values into account

No evidence of cancer 20 6

Inconclusive 27 7



suggests our participants would use this infor-

mation to assist them to understand the test

results. This difference between doctors and

participants in this study highlights the need,

when providing information, to consider the

purpose for which people, in practice, would use

the information. It raises two important issues.

First, the extent to which patients can or want to

be, in practice, involved in decisions about

having a diagnostic test, given they may not

want relevant information before making a

decision. Second, the relationship between

diagnostic test, screening test and treatment

decisions. Are diagnostic tests so different from

screening tests and treatment that the same

issues about informed decision-making and

recommendations regarding what information

should be provided to patients, do not apply?

It may be that, as in this study, people do not

perceive there is a decision to make when they

have a symptom, as testing is considered the

only option. However with screening and treat-

ment people perceive there are at least two

options (to have or not have screening ⁄treatment), and therefore a decision to make.

However, this argument ignores the fact that the

majority of women want an equal or more active

role in test decision-making.15 Therefore, if they

want to be involved in decision-making, they

should be provided with the relevant informa-

tion, otherwise they are unable to make an

informed decision. This raises questions about

how to ensure patients obtain the necessary

information to enable them make an informed

decision while accommodating information

preferences. While this issue has been raised in

the context of diagnostic breast tests in this

study, it may not be confined to such tests.

The lack of relevance of statistical informa-

tion for some women poses a problem for their

involvement in decision-making. Health-related

decisions are commonly based on statistical

information with average values. For example,

the national breast screening program in Aus-

tralia uses statistics to provide reasons why

women aged 50–69 years should attend for

a screening mammogram every 2 years.27 If

women do not consider statistical information

relevant because it is group data that may not

represent them as an individual, on what basis

can they make an informed decision?

This is the first known study to assess women’s

understanding of breast biopsy results. A sub-

stantial proportion of women were unable to

correctly interpret a no evidence of cancer and an

inconclusive result. Some women found the lack

of a neutral category between likely and unlikely

difficult, but as the probabilities they were being

asked to interpret were 0.1% and 18%, their

difficulty suggests that women may not under-

stand the results. Consistent with the litera-

ture,17–22 there was considerable variation in the

numerical values women assigned to each of the

qualitative labels. When these differences were

taken into account, few women correctly inter-

preted the test results. Most women’s inability to

correctly interpret a diagnostic test result using

qualitative labels suggests such descriptors, often

used to describe probability in health-care, may

be inappropriate for health-care consumers.

Limitations

This was a qualitative study involving a sub-

sample of women who had completed a popu-

lation-based telephone survey on women’s

preferences for and experiences in decision-

making for tests and treatment and their need

for information. Compared with the general

population, interview participants were more

likely to be older, live in a metropolitan area and

have post-school qualifications. Our sample

includes women most and least likely to want to

participate in health-care decisions and to want

information.15 This study cannot provide any

information about the extent to which the pref-

erences for information content and presenta-

tion found in this study represent those of other

women in the community. Thus it would be

pertinent to assess the prevalence of the prefer-

ences found in this study in a larger represen-

tative sample of women.

This study elicited preferences for different

presentation formats. An assessment of the

understanding of information using different

presentation formats was outside the scope of



this study. However, given that the most pre-

ferred format may not be the best understood

format, there is a need to assess women’s

understanding of information using the formats

they selected as most preferred in this study.

Conclusion

This study builds on previous research with a

representative sample of women,15 which found

women want information on test accuracy and

test side-effects, by providing a valuable insight

into women’s preferences for the content and

presentation of information materials for, and

their understanding of, diagnostic breast test

results. In addition, it raises several important

issues that have the potential to impact on the

provision of information to consumers and

their involvement in health-care decisions: (1)

differences in the way health-care professionals

and consumers use information on the post-test

probability of disease and related questions

about consumers� ability to participate in diag-

nostic test decision-making; (2) the reconcili-

ation of the provision of information necessary

for informed decision-making with consumer

preferences; and (3) potential differences in the

way diagnostic tests, screening tests and treat-

ment are viewed by consumers.

Acknowledgements

This research was supported by a grant from the

National Health and Medical Research Council,

Australia.

References

1 Ward J. Population-based mammographic screening:

Does �informed choice� require any less than full

disclosure to individuals of benefits, harms, limita-

tions and consequences? Australian and New Zealand

Journal of Public Health, 1999; 23: 301–304.

2 Coulter A, Entwistle V, Gilbert D. Sharing decisions

with patients: is the information good enough?

British Medical Journal, 1999; 318: 318–322.

3 Fallowfield, L. Participation of patients in deci-

sions about treatment for cancer: Desire for

information is not the same as a desire to parti-

cipate in decision making. British Medical Journal,

2001; 323: 1144.

4 General Medical Council. Seeking Patients� Consent:

the Ethical Considerations. London: General

Medical Council, 1998.

5 American College of Physicians. Clinical Guideline

part III: screening for prostate cancer. Annals of

Internal Medicine, 1997; 126: 480–484.

6 American College of Physicians. Guidelines for

counselling postmenopausal women about preventive

hormone therapy. Annals of Internal Medicine, 1992;

117: 1038–1041.

7 Schofield MJ, Sanson-Fisher R. How to prepare

cancer patients for potentially threatening medical

procedures: consensus guidelines. Journal of Cancer

Education, 1996; 11: 153–158.

8 D’haese S, Vinh-Hung V, Bijdekerke P et al. The

effect of timing of the provision of information on

anxiety and satisfaction of cancer patients receiving

radiotherapy. Journal of Cancer Education, 2000; 15:

223–227.

9 Humphris GM, Ireland RS, Field EA. Randomised

trial of the psychological effect of information about

oral cancer in primary care settings. Oral Oncology,

2001; 37: 548–552.

10 Mainiero MB, Schepps B, Clements NC, Bird CE.

Mammography-related anxiety: effect of preproce-

dural patient education. Womens Health Issues, 2001;

11: 110–115.

11 Poroch D. The effect of preparatory patient educa-

tion on the anxiety and satisfaction of cancer patients

receiving radiation therapy. Cancer Nursing, 1995;

18: 206–214.

12 Croft E, Barratt A, Butow P. Information about tests

for breast cancer: what are we telling people? Journal

of Family Practice, 2002; 51: 858–860.

13 Slaytor EK, Ward JE. How risks of breast cancer and

benefits of screening are communicated to women:

analysis of 58 pamphlets. British Medical Journal,

1998; 317: 263–264.

14 Hamm RM, Smith SL. The accuracy of patients�judgments of disease probability and test sensitivity

and specificity. Journal of Family Practice, 1998; 47:

44–52.

15 Davey HM, Barratt AL, Davey E et al. Medical

tests: women’s reported and preferred decision

making roles and preferences for information on

benefits, side effects and false results. Health

Expectations, 2002; 5: 330–340.

16 Houssami N, Irwig L. Likelihood ratios for clinical

examination, mammography, ultrasound and fine

needle biopsy in women with breast problems. The

Breast, 1998; 7: 85–89.

17 Bryant GD, Norman GR. Expressions of probabil-

ity: words and numbers. New England Journal of

Medicine, 1980; 302: 411.



18 Kong A, Barnett GO, Mosteller F, Youtz C. How

medical professionals evaluate expressions of prob-

ability. New England Journal of Medicine, 1986; 315:

740–744.

19 Mazur DJ, Hickam DH. Patients� interpretations of

probability terms. Journal of General Internal

Medicine, 1991; 6: 237–240.

20 Nakao MA, Axelrod S. Numbers are better than

words. Verbal specifications of frequency have no

place in medicine. American Journal of Medicine,

1983; 74: 1061–1065.

21 Robertson WO. Quantifying the meanings of words.

Journal of the American Medical Association, 1983;

249: 2631–2632.

22 Woloshin KK, Ruffin MT, IV, Gorenflo DW.

Patients� interpretation of qualitative probability

statements. Archives of Family Medicine, 1994; 3:

961–966.

23 SPSS Inc. SPSS Version 10.0.5 for Windows.

Chicago: SPSS Inc., 1999.

24 Glaser BG, Strauss Al. The Discovery of Grounded

Theory: Strategies for Qualitative Research. Aldine

Publishing Company: New York, 1967.

25 Australian Bureau of Statistics. Data provided on

request.

26 Feldman-Stewart D, Brundage MD, McConnell BA,

MacKillop WJ. Practical issues in assisting shared

decision-making. Health Expectations, 2000; 3: 46–54.

27 Why Should I Have A Mammogram? Available at:

http://www.breastscreen.info.au/why/index.htm

(Accessed 20 June 2002).



consumer information materials for diagnostic breast tests: women's views on information and...

Documents