life with a food allergy: the impact of food allergy on quality of life, stress and anxiety

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Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety Dr Rebecca Knibb Centre for Psychological Research University of Derby

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Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety. Dr Rebecca Knibb Centre for Psychological Research University of Derby. Death from food allergy is relatively rare - PowerPoint PPT Presentation

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Page 1: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Life with a food allergy:

The impact of food allergy on quality of

life, stress and anxietyDr Rebecca Knibb

Centre for Psychological Research

University of Derby

Page 2: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Death from food allergy is relatively rare

Pumphrey & Gowland (2007) reported 48 deaths from 1999-2006 that could be attributed to food; the majority were in the 11-30yr age bracket and had occurred outside the family home

However, the impact of food allergy on quality of life and psychological distress in both sufferers and their family is profound

Page 3: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Impact on Quality of LifeA recent review of the literature on the impact of QoL on food allergy found just 15 studies had examined this important issue (Marklund et al., 2007); only 8 of these had solely examined QoL in food allergy

They concluded that food allergy had a significant impact on QoL of children and their parents, adolescents and adults.

Areas affected in particular were family and social activities, emotional factors and family economy

QoL was also more affected when the sufferer had concomitant atopic illness or had more than one food allergy

Page 4: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Primeau et al., 2000 (Canada)

AimInvestigate QoL in children and adults with peanut allergy using parental ratings; compared to parental ratings of children with rheumatological disease

MethodsAsked 153 parents to rate QoL of their child with peanut allergy using the Impact on Family Questionnaire

Asked 37 adults with peanut allergy to rate their own QoLCompared them to 69 parental ratings of children with rheumatological disease or 42 adults with the disease

Page 5: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Results

Parents of children with peanut allergy reported that their children had:

1. More disruption to daily activities

2. More disruption in normal social family interaction as a direct consequence of the illness

Compared to children with rheumatological disease

Reverse was true for adults

Page 6: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Sicherer et al, 2001 (USA)

AimAssess parental perceptions of QoL in children with food allergy

MethodsAssessed parental perceptions of physical and social functioning in 253 children and adolescents (aged 5-18) with food allergies using CHQ-PF50Compared with a normal population control group

Page 7: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Results

Families scored significantly lower for general health perception

They had greater distress and worry for their child’s condition

Felt there were greater limitations and interruptions to family life

Than the norm group scores

Page 8: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Bollinger et al., 2006

AimInvestigate impact of food allergy on daily activities of food allergic children and their families

Methods101 care-givers were given a study-specific Qu and a Food Allergy Impact Scale

ResultsMore than half the care-givers reported impact on meal preparation, social activities such as parties and sleepovers

Page 9: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety
Page 10: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Avery et al., 2003 (U.K.)AimAssess QoL of children with peanut allergy from the child’s perspective

Methods20 children with peanut allergy were compared with 20 diabetic children

Disease-specific QoL questionnaires were usedChilden took photographs of things that represented their QoL (Photovoice)

Page 11: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Results

Children with food allergies reported an overall poorer QoL than children with IDDM

Children with food allergies reported greater anxiety about eating, especially away from home

Children with food allergies took more food-related photographs, especially restaurant related photos

Page 12: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Valentine & Knibb, 2004 (U.K.)AimAssess QoL in children with food allergies and their primary care-giver

MethodsValidated generic QoL measures used (WHOQOL-BREF ; PEDS-QL)

Children and carer took photo’s and filled in a diary over a one week period

Compared with healthy childrenValentine & Knibb, paper in prep for Ped Allergy Immunol

Page 13: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

ResultsParents of children with food allergies had significantly lower QoL in their social relationships and lower overall QoL

Children with food allergies scored lower on social and emotional QoL

Photo analysis showed that food allergy particularly influenced domains of education, food/drink, health and places

Page 14: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Semper & Knibb, 2004 (U.K.)AimAssess QoL of parents of children with food allergy

Methods157 parents with food allergic children completed questionnaires measuring QoL (COMQOL-A5; Family Impact Scale)

Page 15: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

ResultsParents rated their subjective quality of life as significantly less impaired than indicated by an objective measure of quality of life (p<.001)

Scores on the FIS illustrated that there was a significant impact on

personal strain, familial, social financial aspects of their family life

as numbers of food types their children were allergic to increased (p>.001)

Page 16: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

King, Knibb & Hourihane (2008)

Investigated the burden of peanut allergy on families including father & older sibling

46 families were recruited from the Children’s Allergy Clinic, Southampton General Hospital (UK)

Inclusion criteria: Child with peanut allergy aged 8 to 12 years Older sibling (15 years and under) no history of food allergy or

intolerance living in family home Parents no personal history of food allergy or intolerance

Children & parents given age-specific information sheets, consent forms & questionnaires to fill in at home

King, Knibb & Hourihane, Allergy, in press

Page 17: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Inter-Relationships Investigated

Mother Father

Child with Peanut

Allergy

OlderSibling

Page 18: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Measures

MOTHERS & FATHERS

OLDER SIBLING CHILD WITH PEANUT ALLERGY

Avery Scale(proxy for child with PA)

Avery Scale(proxy for child with PA)

Avery Scale

PSS Spence Anxiety Scale

Spence Anxiety Scale

WHOQoL-BREF PedsQLTM 4.0 PedsQLTM 4.0

PedsQLTM 4.0(proxy for child with PA)

PedsQLTM 4.0 (proxy for child with PA)

STAI

Page 19: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Results

Parental differences:Mothers rated own psychological QoL

(t(90)=3.16, p=0.002) and physical QoL (t(90)=2.08, p=0.04) significantly worse than fathers

Mothers scored higher than fathers on trait anxiety (t(88)=-3.33, p=0.001) state anxiety (t(89)=-2.13, p=0.04) stress (t(89)=-4.23, p<0.001)

Page 20: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

05

10152025303540

PSS STAI1 STAI2 Phys QoL PsychQoL

MotherFather

Parental ScoresScale scores for stress (PSS) state anxiety (STAI1), trait anxiety (STAI2), and physical and psychological QoL (WHOQoL-BREF) for mothers and fathers

Page 21: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Sibling Differences

Children with PA had lower ratings than siblings for:health related quality of life (t(75.9)=-2.31,

p=0.02)quality of life within school (t(87)=-2.64,

p=0.01)total quality of life (t(87)=2.02, p=0.05)

They rated separation anxiety as significantly higher than their siblings t(85)=2.39, p=0.02

Page 22: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Gender Differences - Anxiety No differences in anxiety ratings between

boys with peanut allergy and male siblings

Girls with peanut allergy were more anxious than female siblings for:Separation anxiety, t(39)=2.35, p=0.02 Anxiety over physical injury, t(39)=2.10,

p<0.05

Page 23: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Gender differences - QoL

Boys with peanut allergy only rated QoL in school as significantly worse than male siblings, t(45), -2.05, p<0.05

Girls with peanut allergy rated QoL in school, t(40), -1.96, p=0.0, health related QoL, t(40), -2.36, p=0.02 and total QoL as worse than female siblings, t(45), -2.09, p<0.05

Page 24: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Mothers rated food specific QoL of child with peanut allergy significantly worse than child’s own ratings and proxy ratings of sibling & father

(F(3,120)=4.07, p=0.009)

48

49

50

51

52

53

54

55

PA child Sibling Mother Father

MeanAveryscore

Proxy Ratings

Page 25: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Mothers & fathers rated emotional QoL of their child with peanut allergy significantly worse than child’s own ratings or proxy ratings of sibling

(F(3,123)=4.07, p=0.006)

64

66

68

70

72

74

76

78

PA child Sibling Mother Father

EmotionalQoL score

Proxy Ratings

Page 26: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Conclusion

Mothers show significantly poorer QoL, more anxiety & stress than affected child’s father or sibling – “burden of allergy”

This inter-parental difference may be an important

feature of family stress caused by peanut allergy

Our findings add to the growing literature supporting a gender difference in the parental impact of child chronic illness

Page 27: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Conclusion

Mothers rate QoL of child with peanut allergy lower than the child does

These differences call into question the findings of studies that have relied solely on proxy measures of the impact of peanut allergy on quality of life of children

Older siblings may have more realistic view of how child with PA views their QoL

Page 28: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Conclusion

Children with peanut allergy need to develop self-care behaviours and take more responsibility for their own allergy risk assessments as they grow up

Fostering these behaviours in younger children while counselling mothers regarding ways in which they could do this may help reduce anxiety levels

Page 29: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Much of the work on QoL examines clinic samples or those that have already been diagnosed with food allergy

Little is known how suspected food allergy impacts on the parents prior to diagnosis in their child

Page 30: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Lack of specialist allergy services results in difficulties in getting referrals and long waiting times before parents can confirm whether food allergy is causing symptoms in their child

They therefore have to cope with this uncertainty and develop ways to manage suspected food allergy in their child

Page 31: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Knibb & Semper, 2008 (U.K.) Aimed to assess anxiety and depression levels of

parents before and after attendance at allergy clinic to have their child diagnosed for suspected food allergy

To investigate lifestyle and dietary changes before and after clinic attendance

To ascertain informational and general knowledge sources of food allergy for parents

Knibb & Semper, paper in prep for Clin Exp Allergy

Page 32: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Methods Participants: 125 parents visiting one of two allergy

clinics in the Midlands, U.K. to have their child assessed for food allergy

Materials: a study-specific questionnaire Hospital Anxiety and Depression Scale

Questionnaires were completed at arrival at clinic prior to the consultation. A second questionnaire pack was sent to their home 3-4 weeks later; 51 parents responded to this.

The study received ethical approval from the relevant local NHS ethics committees.

Page 33: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Results

The majority (97%) of participants were mothers of children with suspected food allergy

Mean referral time to the clinic from the G.P was 3.2 months however some mothers had waited up to 2 years before their GP would refer them to the clinic

Page 34: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Foods and symptoms reported by parentsFoods % Symptoms %Peanuts 22.2 Diarrhoea 3.8Other nuts 20.8 Vomiting 12.9Fish 4.5 Eczema 10.1Shellfish 4.5 Urticaria 21.3Hens eggs 12.1 Asthma 6.3Cows milk 10.1 Breathing problems 12.0Wheat 3.0 Rhinitis 3.3Fruit 3.0 Facial swelling 21.6Additives 6.0 Behavioural/migraine 5.2

Page 35: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Changes prior to clinic attendance 86.4% of parents reported an impact on

their lifestyle prior to clinic attendance 76% of parents had made changes to their

child’s diet prior to clinic attendance 35.2% had made changes to their whole

family’s diet Only 35% had been given advice about

these changes And only 50% of those who returned the

2nd questionnaire had a positive SPT

Page 36: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Lifestyle and dietary changesLifestyle changes Pre clinic Post clinic

Checking food labels 71.2 54.9Difficulties eating out 22.4 21.6Social activities problematic 18.4 9.8Child has own meals at school 32.0 19.6Taken time off work 27.2 11.8Dietary changes Not asked

Remove food 67.2Reduce food quantity 6.4Use alternative food 16.8Use nutritional supplements 4.8

Page 37: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Anxiety levels

Anxiety Pre clinic (%) Post clinic (%)Normal 67.5 60.0Mild 14.2 24.5Moderate 15.0 13.3Severe 3.3 2.2Mean score (s.d.) 6.45 (2.55) 6.35 (3.85)

There was no significant difference between anxiety mean scores (t(42)=-1.72, p<0.093) pre and post clinic.

After the clinic visit there were less parents with normal anxiety levels, and more parents with mild anxiety, but this did not reach significance.

Page 38: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Depression levels

Depression Pre clinic (%) Post clinic (%)Normal 82.5 86.9Mild 16.5 10.5Moderate 1.0 2.6Severe 0 0Mean score (s.d.) 3.25 (3.19) 3.18 (3.10)

There was no significant difference between depression mean scores (t(35)=-1.40, p<0.17) pre and post clinic.

After the clinic visit there were less parents with normal or mild depression levels, and significantly more parents with moderate depression levels, but this was not significant with such low Ns.

Page 39: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Information and knowledge

Source Information General KnowledgePre clinic Post clinic

Medical 50.4 35.8 30.1Media 32.1 43.4 49.1Family/friends 13.9 17.6 17.6Support groups 3.6 3.2 3.2

A significantly greater proportion of general knowledge came from non-medical sources compared to medical sources both pre-clinic (2(1)=48.55, p<0.001) and post-clinic (2(1)=57.85, p<0.001). There was no difference for information sources.

Page 40: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Discussion Prior to diagnosis suspected food allergy does have

an impact on the lives of the child and parents.

The majority of parents had removed foods from their child’s diet, although only around a third had received advice about this.

Suspected food allergy also impacted on the lifestyle of the family, with parents checking food labels and finding difficulties eating in restaurants or taking their child to parties.

Page 41: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Anxiety and depression was found to be present in parents prior to diagnosis of food allergy in their child

These levels did not reduce in the short term after the clinic visit. Indeed the previous study (King et al., in press) indicated that anxiety levels remain higher in the longer term also

Ways in which we communicate allergy information prior to clinic, at clinic and after clinic attendance, should be investigated to see if we can reduce this distress

Page 42: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

In addition, parents reported that they got their food allergy knowledge from non-medical sources such as the media, family and friends .

It is clear that accurate and easy to understand information about food allergy needs to be disseminated to the general public in order for parents to be able to make appropriately informed choices if they suspect their child has a food allergy.

Ways in which the impact on diet, lifestyle and psychological distress can be minimised prior to diagnosis of food allergy also need to be investigated.

Page 43: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Can coping reduce this distress?Knibb & Horton, 2008 Aim was to measure the extent to which illness

perceptions and coping strategies are associated with levels of psychological distress in allergy sufferers

156 allergy sufferers recruited from Allergy U.K. 13+ yrs with medically confirmed or self-reported

allergy or food intolerance mean age 44yrs; 88% female; 94% White

Measures Revised Illness Perception Questionnaire (IPQ-R) COPE Inventory Perceived Stress Scale (PSS) General Health Questionnaire (GHQ-28)

Knibb & Horton (2008) British Journal of Health Psychology

Page 44: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Summary of regression analyses Illness representations explained between 6-26% of the

variance on measures of psychological distress

Coping strategies explained between 12-25%

Variables associated with higher levels of distress Strong illness identity assoc with somatic symptoms Emotional representations of the allergy assoc with

higher levels of social dysfunction, depression and stress

Less adaptive coping strategies such as focusing on and venting of emotions

Page 45: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Variables associated with lower levels of distress: Strong personal control beliefs assoc with less depression Control over treatment assoc with fewer somatic

symptoms Adaptive coping strategies such as positive

reinterpretation and growth assoc with less anxiety, insomnia and depression

Coping partially mediated the link between illness perceptions and outcome

Variables retaining an independent significant association with psychological distress: Strong illness identity with somatic symptoms Strong emotional representations with severe depression Less personal control with severe depression

Page 46: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Risk Taking in food allergy sufferersOnly 61% of 13-21 yr olds reported always carrying their medication (Sampson et al., 2006)

‘may contain…’ labelling or ‘contains allergen traces’ is frustrating

Many adolescents ignore it and eat the foods anyway (Gowland, 2001)

Only 37% of parents always avoided foods that may contain traces of the allergen (Semper & Knibb, 2008)

Page 47: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

OVERALL CONCLUSIONS

Life before diagnosis, at diagnosis and during management of food allergy needs to be examined when looking at how allergy affects the child and adult sufferer

Psychological affects on the sufferer and the family are varied and can be severe

Further research using validated scales are needed on non-clinic populations

Page 48: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

TARGETS FOR INTERVENTIONSTeach allergy sufferers new coping strategies such as positive reinterpretation of their allergy

Reduce emotional reactions to allergy and promote beliefs in the effectiveness of both personal and treatment control

Improve methods of communication of information for parents and sufferers

Improved education for sufferers, carers, health care professionals

Pumphrey & Gowland (2007) reported that over half those dying had no professional advice and a small number had misleading advice

Page 49: Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety

Thank you and any questions…..