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 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

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
Mother
Father
Aims of the Study
Investigate effects of peanut allergy on QoL of children with peanut allergy, their parents & older sibling
We were looking at the differences in the quality of life within the family group, differences between the parents and the siblings
How 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 child
Child with
Peanut
Allergy
Older
Sibling

18. CHILD WITH PEANUT ALLERGY
Measures
MOTHERS & FATHERS
OLDER SIBLING
CHILD WITH PEANUT ALLERGY
Avery Scale
(proxy for child with PA)
PSS
Spence Anxiety Scale
WHOQoL-BREF
PedsQLTM 4.0
PedsQLTM 4.0 (proxy for child with PA)
STAI
Avery scale = peanut specific quality of life scale we developed in Soton
Stress in adults measured by PSS (Perceived Stress Scale)
Children completed age specific Spence Anxiety Scale
Parents and children completed age specific generic physical & psychological QoL = how they generally view their QoL
State anxiety STAI1 = how they feel now
Trait 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 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)
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 Scores
Scale scores for stress (PSS) state anxiety (STAI1), trait anxiety (STAI2), and physical and psychological QoL (WHOQoL-BREF) for mothers and fathers
Stress = PSS
State anxiety STAI1 = how they feel now
Trait anxiety STAI2 = how they generally feel
The higher scores show greater stress and anxiety
Generic physical & psychological QoL = how they generally view their QoL
The lower the score the poorer the QoL

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), -2.36, p=0.02 and total QoL as worse than female siblings, t(45), -2.09, p<0.05

24. Proxy Ratings
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)
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 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)
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. 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
Mothers stress and anxiety is greater than fathers – they appear to carry the burden
We 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. 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
Children 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 sibling
Older siblings have a more realistic view of how their sibling with PA views their quality of life

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
We 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 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. Foods and symptoms reported by parents%
Symptoms
Peanuts
22.2
Diarrhoea
3.8
Other nuts
20.8
Vomiting
12.9
Fish
4.5
Eczema
10.1
Shellfish
Urticaria
21.3
Hens eggs
12.1
Asthma
6.3
Cows milk
Breathing problems
12.0
Wheat
3.0
Rhinitis
3.3
Fruit
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 2nd questionnaire had a positive SPT

36. Lifestyle and dietary changes
Lifestyle changes
Pre clinic
Post clinic
Checking food labels
71.2
54.9
Difficulties eating out
22.4
21.6
Social activities problematic
18.4
9.8
Child has own meals at school
32.0
19.6
Taken time off work
27.2
11.8
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 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.
Anxiety
Pre clinic (%)
Post clinic (%)
Normal
67.5
60.0
Mild
14.2
24.5
Moderate
15.0
13.3
Severe
3.3
2.2
Mean 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.
Depression
Pre clinic (%)
Post clinic (%)
Normal
82.5
86.9
Mild
16.5
10.5
Moderate
1.0
2.6
Severe
Mean 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.
Source
Information
General Knowledge
Pre clinic
Post clinic
Medical
50.4
35.8
30.1
Media
32.1
43.4
49.1
Family/friends
13.9
17.6
Support groups
3.6
3.2

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…..