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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.

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Presentation on theme: "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."— Presentation transcript:

1 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

2 Death from food allergy is relatively rare Pumphrey & Gowland (2007) reported 48 deaths from that could be attributed to food; the majority were in the yr 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

3 Impact on Quality of Life A 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

4 Primeau et al., 2000 (Canada) Aim Investigate QoL in children and adults with peanut allergy using parental ratings; compared to parental ratings of children with rheumatological disease Methods Asked 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 QoL Compared them to 69 parental ratings of children with rheumatological disease or 42 adults with the disease

5 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

6 Sicherer et al, 2001 (USA) Aim Assess parental perceptions of QoL in children with food allergy Methods Assessed parental perceptions of physical and social functioning in 253 children and adolescents (aged 5-18) with food allergies using CHQ-PF50 Compared with a normal population control group

7 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

8 Bollinger et al., 2006 Aim Investigate impact of food allergy on daily activities of food allergic children and their families Methods 101 care-givers were given a study-specific Qu and a Food Allergy Impact Scale Results More than half the care-givers reported impact on meal preparation, social activities such as parties and sleepovers


10 Avery et al., 2003 (U.K.) Aim Assess QoL of children with peanut allergy from the child’s perspective Methods 20 children with peanut allergy were compared with 20 diabetic children Disease-specific QoL questionnaires were used Childen took photographs of things that represented their QoL (Photovoice)

11 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

12 Valentine & Knibb, 2004 (U.K.) Aim Assess QoL in children with food allergies and their primary care-giver Methods Validated 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 children Valentine & Knibb, paper in prep for Ped Allergy Immunol

13 Results Parents 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

14 Semper & Knibb, 2004 (U.K.) Aim Assess QoL of parents of children with food allergy Methods 157 parents with food allergic children completed questionnaires measuring QoL (COMQOL-A5; Family Impact Scale)

15 Results Parents 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)

16 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

17 Inter-Relationships Investigated M other Father Child with Peanut Allergy Older Sibling

18 Measures MOTHERS & FATHERS OLDER SIBLINGCHILD WITH PEANUT ALLERGY Avery Scale (proxy for child with PA) Avery Scale (proxy for child with PA) Avery Scale PSSSpence Anxiety Scale WHOQoL-BREFPedsQL TM 4.0 (proxy for child with PA) PedsQL TM 4.0 (proxy for child with PA) STAI

19 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)

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

21 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

22 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

23 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), , p=0.02 and total QoL as worse than female siblings, t(45), -2.09, p<0.05

24 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) Proxy Ratings

25 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) Proxy Ratings

26 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

27 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

28 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

29 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

30 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

31 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

32 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.

33 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

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

35 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 2 nd questionnaire had a positive SPT

36 Lifestyle and dietary changes Lifestyle changes Pre clinicPost clinic Checking food labels Difficulties eating out Social activities problematic Child has own meals at school Taken time off work Dietary changes Not asked Remove food 67.2 Reduce food quantity 6.4 Use alternative food 16.8 Use nutritional supplements 4.8

37 Anxiety levels AnxietyPre clinic (%)Post clinic (%) Normal Mild Moderate Severe Mean 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.

38 Depression levels DepressionPre clinic (%)Post clinic (%) Normal Mild Moderate Severe 00 Mean 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.

39 Information and knowledge SourceInformationGeneral Knowledge Pre clinicPost clinic Medical Media Family/friends Support groups 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.

40 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.

41 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

42 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.

43 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

44 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

45 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

46 Risk Taking in food allergy sufferers Only 61% of 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)

47 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

48 TARGETS FOR INTERVENTIONS Teach 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

49 Thank you and any questions…..

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