Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety
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Transcript of 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
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
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
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
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
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
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
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
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)
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
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
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
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)
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)
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
Inter-Relationships Investigated
Mother Father
Child with Peanut
Allergy
OlderSibling
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
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)
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
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
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
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
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
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
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
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
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
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
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
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
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.
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
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
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
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
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.
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.
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.
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.
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
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.
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
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
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
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)
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
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
Thank you and any questions…..