Presentation on theme: "Life with a food allergy:"— Presentation transcript:
1 Life with a food allergy: The impact of food allergy on quality of life, stress and anxietyDr Rebecca KnibbCentre for Psychological ResearchUniversity 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 11-30yr age bracket and had occurred outside the family homeHowever, 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 allergyThey 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 economyQoL 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 diseaseMethodsAsked 153 parents to rate QoL of their child with peanut allergy using the Impact on Family QuestionnaireAsked 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
5 ResultsParents of children with peanut allergy reported that their children had:1. More disruption to daily activities2. More disruption in normal social family interaction as a direct consequence of the illnessCompared to children with rheumatological diseaseReverse was true for adults
6 Sicherer et al, 2001 (USA) Aim Assess parental perceptions of QoL in children with food allergyMethodsAssessed 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
7 ResultsFamilies scored significantly lower for general health perceptionThey had greater distress and worry for their child’s conditionFelt there were greater limitations and interruptions to family lifeThan the norm group scores
8 Bollinger et al., 2006AimInvestigate impact of food allergy on daily activities of food allergic children and their familiesMethods101 care-givers were given a study-specific Qu and a Food Allergy Impact ScaleResultsMore than half the care-givers reported impact on meal preparation, social activities such as parties and sleepovers
10 Avery et al., 2003 (U.K.)AimAssess QoL of children with peanut allergy from the child’s perspectiveMethods20 children with peanut allergy were compared with 20 diabetic childrenDisease-specific QoL questionnaires were usedChilden took photographs of things that represented their QoL (Photovoice)
11 ResultsChildren with food allergies reported an overall poorer QoL than children with IDDMChildren with food allergies reported greater anxiety about eating, especially away from homeChildren 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-giverMethodsValidated generic QoL measures used (WHOQOL-BREF ; PEDS-QL)Children and carer took photo’s and filled in a diary over a one week periodCompared with healthy childrenValentine & Knibb, paper in prep for Ped Allergy Immunol
13 ResultsParents of children with food allergies had significantly lower QoL in their social relationships and lower overall QoLChildren with food allergies scored lower on social and emotional QoLPhoto analysis showed that food allergy particularly influenced domains of education, food/drink, health and places
14 Semper & Knibb, 2004 (U.K.)AimAssess QoL of parents of children with food allergyMethods157 parents with food allergic children completed questionnaires measuring QoL (COMQOL-A5; Family Impact Scale)
15 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 onpersonal strain,familial,socialfinancial aspects of their family lifeas 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 sibling46 families were recruited from the Children’s Allergy Clinic, Southampton General Hospital (UK)Inclusion criteria:Child with peanut allergy aged 8 to 12 yearsOlder sibling (15 years and under) no history of food allergy or intolerance living in family homeParents no personal history of food allergy or intoleranceChildren & parents given age-specific information sheets, consent forms & questionnaires to fill in at homeKing, Knibb & Hourihane, Allergy, in press
17 Inter-Relationships Investigated MotherFatherAims of the StudyInvestigate effects of peanut allergy on QoL of children with peanut allergy, their parents & older siblingWe were looking at the differences in the quality of life within the family group, differences between the parents and the siblingsHow the child with PA rate their quality of life compared to how the mother and father and older sibling rate the quality of life of the peanut allergic childChild withPeanutAllergyOlderSibling
18 CHILD WITH PEANUT ALLERGY MeasuresMOTHERS & FATHERSOLDER SIBLINGCHILD WITH PEANUT ALLERGYAvery Scale(proxy for child with PA)PSSSpence Anxiety ScaleWHOQoL-BREFPedsQLTM 4.0PedsQLTM 4.0 (proxy for child with PA)STAIAvery scale = peanut specific quality of life scale we developed in SotonStress in adults measured by PSS (Perceived Stress Scale)Children completed age specific Spence Anxiety ScaleParents and children completed age specific generic physical & psychological QoL = how they generally view their QoLState anxiety STAI1 = how they feel nowTrait anxiety STAI2 = how they generally feel
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 fathersMothers scored higher than fathers ontrait 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)41 families have consented to take part so far.When looking at the parental differences, the mothers had significantly worse psychological and physical quality of life than the fathers.The mothers also had higher state and trait anxiety and were more highly stressed than the fathers.
20 Parental ScoresScale scores for stress (PSS) state anxiety (STAI1), trait anxiety (STAI2), and physical and psychological QoL (WHOQoL-BREF) for mothers and fathersStress = PSSState anxiety STAI1 = how they feel nowTrait anxiety STAI2 = how they generally feelThe higher scores show greater stress and anxietyGeneric physical & psychological QoL = how they generally view their QoLThe lower the score the poorer the QoL
21 Sibling DifferencesChildren 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 siblingsGirls with peanut allergy were more anxious than female siblings for:Separation anxiety, t(39)=2.35, p=0.02Anxiety 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<0.05Girls 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
24 Proxy RatingsMothers 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)Higher score shows worse QoL. Here the mothers rate their child with PA’s food specific QoL much worse than anyone else in the family.The siblings here show they are more in touch with their younger sibling with PA’s rating of their QoL than are the parents
25 Proxy RatingsMothers & 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)Lower score shows a worse QoL Mothers and fathers rate PA child’s emotional QoL much worse than the child does or their sibling does.Again the siblings here show they are more in touch with their younger sibling with PA emotions than are the parents.
26 ConclusionMothers 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 allergyOur findings add to the growing literature supporting a gender difference in the parental impact of child chronic illnessMothers stress and anxiety is greater than fathers – they appear to carry the burdenWe question whether the difference between Mother and Father may lead to greater family stress caused by peanut allergy.However we realise we might have an under-estimated Father’s stress and anxiety due to self-reporting bias (men are less likely to admit to stress and anxiety than women) however the differences we found are large.
27 ConclusionMothers rate QoL of child with peanut allergy lower than the child doesThese 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 childrenOlder siblings may have more realistic view of how child with PA views their QoLChildren with PA reported greater separation anxiety, being away from home and family, they had a lower perception of their general health compared to their sibling and a poorer quality of life at school than their sibling.The constant vigilance required in caring for a child with peanut allergy appears to be related to the increased stress and anxiety exhibited by the main carer which could in turn be related to the greater separation anxiety exhibited by the child with PA which is not seen in the older siblingOlder siblings have a more realistic view of how their sibling with PA views their quality of life
28 ConclusionChildren with peanut allergy need to develop self-care behaviours and take more responsibility for their own allergy risk assessments as they grow upFostering these behaviours in younger children while counselling mothers regarding ways in which they could do this may help reduce anxiety levelsWe suggest that the family needs to me aware of the greater psychological distress shown by the mother.We should treat each family member as an individual and address their needs separately.As clinicians we need to think about the whole family, in particular the mother – we need to find out what is the cause of this distress, we should ask them, and target those areas in our practice. Is it that they fear their child could die? – we do our best in clinic to educate them in the management of allergy.The question for today is: Are we as clinicians doing enough to help these families?
29 Much of the work on QoL examines clinic samples or those that have already been diagnosed with food allergyLittle 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 childThey 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 allergyTo investigate lifestyle and dietary changes before and after clinic attendanceTo ascertain informational and general knowledge sources of food allergy for parentsKnibb & Semper, paper in prep for Clin Exp Allergy
32 MethodsParticipants: 125 parents visiting one of two allergy clinics in the Midlands, U.K. to have their child assessed for food allergyMaterials:a study-specific questionnaireHospital Anxiety and Depression ScaleQuestionnaires 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 ResultsThe majority (97%) of participants were mothers of children with suspected food allergyMean 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 Foods and symptoms reported by parents %SymptomsPeanuts22.2Diarrhoea3.8Other nuts20.8Vomiting12.9Fish4.5Eczema10.1ShellfishUrticaria21.3Hens eggs12.1Asthma6.3Cows milkBreathing problems12.0Wheat3.0Rhinitis3.3FruitFacial swelling21.6Additives6.0Behavioural/migraine5.2
35 Changes prior to clinic attendance 86.4% of parents reported an impact on their lifestyle prior to clinic attendance76% of parents had made changes to their child’s diet prior to clinic attendance35.2% had made changes to their whole family’s dietOnly 35% had been given advice about these changesAnd only 50% of those who returned the 2nd questionnaire had a positive SPT
36 Lifestyle and dietary changes Lifestyle changesPre clinicPost clinicChecking food labels71.254.9Difficulties eating out22.421.6Social activities problematic18.49.8Child has own meals at school32.019.6Taken time off work27.211.8Dietary changesNot askedRemove food67.2Reduce food quantity6.4Use alternative food16.8Use nutritional supplements4.8
37 Anxiety levels Anxiety Pre clinic (%) Post clinic (%) 67.5 60.0 14.2 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.AnxietyPre clinic (%)Post clinic (%)Normal67.560.0Mild14.224.5Moderate15.013.3Severe3.32.2Mean score (s.d.)6.45 (2.55)6.35 (3.85)
38 Depression levels Depression Pre clinic (%) Post clinic (%) 82.5 86.9 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.DepressionPre clinic (%)Post clinic (%)Normal82.586.9Mild16.510.5Moderate1.02.6SevereMean score (s.d.)3.25 (3.19)3.18 (3.10)
39 Information and knowledge A significantly greater proportion of general knowledge came from non-medical sources compared to medical sources both pre-clinic (c2(1)=48.55, p<0.001) and post-clinic (c2(1)=57.85, p<0.001). There was no difference for information sources.SourceInformationGeneral KnowledgePre clinicPost clinicMedical50.435.830.1Media32.143.449.1Family/friends13.917.6Support groups3.63.2
40 DiscussionPrior 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 childThese 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 alsoWays 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, 2008Aim was to measure the extent to which illness perceptions and coping strategies are associated with levels of psychological distress in allergy sufferers156 allergy sufferers recruited from Allergy U.K.13+ yrs with medically confirmed or self-reported allergy or food intolerancemean age 44yrs; 88% female; 94% WhiteMeasuresRevised Illness Perception Questionnaire (IPQ-R)COPE InventoryPerceived 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 distressCoping strategies explained between 12-25%Variables associated with higher levels of distressStrong illness identity assoc with somatic symptomsEmotional representations of the allergy assoc with higher levels of social dysfunction, depression and stressLess 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 depressionControl over treatment assoc with fewer somatic symptomsAdaptive coping strategies such as positive reinterpretation and growth assoc with less anxiety, insomnia and depressionCoping partially mediated the link between illness perceptions and outcomeVariables retaining an independent significant association with psychological distress:Strong illness identity with somatic symptomsStrong emotional representations with severe depressionLess 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 frustratingMany 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 CONCLUSIONSLife before diagnosis, at diagnosis and during management of food allergy needs to be examined when looking at how allergy affects the child and adult suffererPsychological affects on the sufferer and the family are varied and can be severeFurther 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 allergyReduce emotional reactions to allergy and promote beliefs in the effectiveness of both personal and treatment controlImprove methods of communication of information for parents and sufferersImproved education for sufferers, carers, health care professionalsPumphrey & Gowland (2007) reported that over half those dying had no professional advice and a small number had misleading advice