1. Parental Perceptions of Children’s Anxiety and Quality of Life Jason Landon 1, Inga Stünzner 2, Penny Jorgensen 2, and Daniel Shepherd 3 1 AUT University 2 Allergy New Zealand 3 New Zealand WHOQOL Group

2. Parental Estimates of HRQoL in Children Food allergy is a chronic disease that currently lacks a cure, but has been well studied physiologically. Emerging treatments such as oral immunotherapy and anti-IgE therapy require evaluation. However, outcome measures need to be developed that test the efficacy of these treatments. Specifically, we need measures that are sensitive to changes in health, but what is health?

3. Parental Estimates of HRQoL in Children The World Health Organisation (WHO) defines health thus: Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity. Thus changes in health must be indexed by both objective measurements of maladaptive physiological processes (e.g., IgE levels) and subjective measurements of well-being.

4. Parental Estimates of HRQoL in Children Subjective well-being is synonymous with Quality of Life (QoL), which itself is a multidimensional construct: QoL Environmental Factors Physical Health Social Relationships Psychological Health

5. Parental Estimates of HRQoL in Children Researchers have long been interested in the impact of food allergies upon quality of life. Especially as food allergies can be sporadically symptomatic. As there are other factors specific to food allergies, Dunn-Galvin (2008) shunned generic measures of QoL, and developed her own. Instead she produced an allergy-specific QoL measure for use with children (birth to twelve years).

6. Parental Estimates of HRQoL in Children Dunn-Galvin’s scale asks parents to assess the QoL of children diagnosed with food allergies. Parents are asked to “imagine” they are their child while they relate to aspects of quality of life. Why not ask the children themselves? We often do! But there are many pitfalls associated with this practice:Lack of insight Cognitive limitations Language comprehension Normative pressures

7. Parental Estimates of HRQoL in Children With the help of Allergy NZ we conducted a survey with the aim of evaluating Dunn-Galvin’s scale and to collect information about children with food allergies. Parents were recruited from membership networks and local support groups with the collaboration of Allergy New Zealand (ANZ members => 65%). Inclusion criteria: child currently has a food allergy and were younger than 16 years. Parents were asked to complete the survey in relation to one child only.

8. Parental Estimates of HRQoL in Children Method A web-based questionnaire consisting of 41 items was developed using Survey Monkey. The online instrument focused on: 1) Sample demographics (n=349) 2) Emotional impact, food anxiety and social-dietary limitations as independent measures of the QoL The survey took about 15 minutes to complete and ethical approval was sought and granted for the study.

9. Parental Estimates of HRQoL in Children Sample Demographics (n=349) “ Please indicate the gender of your child.”

10. Parental Estimates of HRQoL in Children Sample Demographics (n=349) “ Please indicate the Age of your child.” Age

11. Parental Estimates of HRQoL in Children Sample Demographics (n=349) “ Please indicate the ethnicity of your child.”

12. Parental Estimates of HRQoL in Children Sample Demographics (n=349) “ Who made the diagnosis?”

13. Parental Estimates of HRQoL in Children Sample Demographics (n=349) “ Has your child been prescribed an EpiPen?.”

14. Parental Estimates of HRQoL in Children Sample Demographics (n=349) “ Has your child had an anaphylactic reaction?.”

15. Parental Estimates of HRQoL in Children Sample Demographics (n=349) “ Please indicate the number of food allergy symptoms your child experiences/perceives (e.g., hives or welts, swelling of the lips, face or eyes, tingling mouth, vomiting, abdominal pain, anaphylaxis etc.).”

16. Parental Estimates of HRQoL in Children Sample Demographics (n=349) “ From what source(s) do you obtain your allergy-related information.”

17. Parental Estimates of HRQoL in Children “ Please indicate which of the following food items your child avoids.”

18. Parental Estimates of HRQoL in Children “ If your child is allergic or hypersensitive to any food items what reactions or symptoms does he/she experience/perceive?”

19. Parental Estimates of HRQoL in Children “ In the past 12 months, has your child experienced symptoms of an allergic reaction as a result of consuming a food item?

20. Parental Estimates of HRQoL in Children “ Is your child allergic or hypersensitive to any of the following?”

21. Parental Estimates of HRQoL in Children “ Is anyone else in the child’s family food allergic or experience food hypersensitivity?”

22. Parental Estimates of HRQoL in Children “ Generally, would you say your child’s health is:”

23. Parental Estimates of HRQoL in Children Dunn-Galvin’s 5-point scales The emotional impact scale consisted of 13 items and measured affective states such as feeling different from other children, frustrations, control and generalised anxiety stemming from food allergy. This scale included items such as “ My child feels different from other children because of food allergy ”.

24. Parental Estimates of HRQoL in Children Dunn-Galvin’s 5-point scales The food anxiety scale consisted of 9 items concerning anxiety relating to specific foods. For example: “My child is afraid to try new foods because of food allergy ”.

25. Parental Estimates of HRQoL in Children Dunn-Galvin’s 5-point scales Social and dietary limitations consisted of 8 items which were concerned with the everyday dietary and social restrictions, and included questions like: “My child’s ability to take part in school events involving food (class, parties, treats, lunchtime) is limited by food allergy ”.

26. Parental Estimates of HRQoL in Children Parental perceptions of Quality of Life in children with food allergies Because of food allergy, Answer Options Strongly Disagree DisagreeNeutralAgree Strongly Agree Rating Average n my child feels different from other children 205076144513.46341 is negatively affected by receiving more attention 4013010160112.63342 experiences physical distress because of symptoms 1232341411243.97343 experiences emotional distress because of symptoms 134663134833.67339 is negatively affected by restrictions on his/her environment 136068137663.53344 Because of food allergy, my child Answer Options Strongly Disagree DisagreeNeutralAgree Strongly Agree Rating Average n is afraid to try new foods32584959463.12244 is concerned that I am worried that he/she will have a reaction 24617459192.95237

27. Parental Estimates of HRQoL in Children Parental perceptions of Quality of Life in children with food allergies Because of food allergy, my child Answer Options Strongly Disagree DisagreeNeutralAgree Strongly Agree Rating Average n wishes his/her food allergy would go away 11049571084.16225 is more anxious in general than other children of the same age 19545072313.19226 does not feel as confident as other children in social situations 34784550202.75227 is more cautious in general than other children of a similar age 16453583483.45227 Because of food allergy, my child Answer Options Strongly Disagree DisagreeNeutralAgree Strongly Agree Rating Average n feels frustrated by dietary restrictions 11436186453.45246 lacks a variety in his/her food30531887623.39250 feels anxious by poor labelling on food products 7234115163.10102

28. Parental Estimates of HRQoL in Children Because of food allergy, my child Answer Options Strongly Disagree DisagreeNeutralAgree Strongly Agree Rating Average had to grow up more quickly than other children of similar age 2192043273.67111 feels worried about the future opportunities and relationships 1535361782.71111 feels that many people do not understand the serious nature of food allergy 3203329263.50111 feels that food allergy restricts his/her life in general 4173638163.41111 Because of food allergy, my child('s) Answer Options Strongly Disagree DisagreeNeutralAgree Strongly Agree Rating Average n ability to take part in preschool/school events involving food is limited 617838313.71100 feels frustrated by social restrictions 6271434183.3199 feels ‘left out’ in activities involving food 5271229273.46100 is upset that family social outings are restricted by the need to plan ahead 7391719173.0099

29. Parental Estimates of HRQoL in Children Because of food allergy, my child('s) Answer Options Strongly Disagree DisagreeNeutralAgree Strongly Agree Rating Average Response Count ability to take part in social activities is limited 25544583433.26250 is restricted because of limitations on restaurants we can safely go to 72022831144.13246 is restricted because of limitations on holiday destinations we can go to 19563562733.47245 What chance do you think your child has of Answer OptionsVery LowLowNeutralHigh Very High Rating Average n accidentally ingesting the food to which they are allergic 21673589373.22249 having a severe reaction if food is accidentally ingested 9341893963.93250 dying from his/her food allergy following ingestion in the future 57655842212.61243 effectively treating oneself, or receiving effective treatment from others (including epipen administration), if he/she accidentally ingests a food to which he/she is allergic 28375898283.24249

30. Parental Estimates of HRQoL in Children Statistical analyses, Barry Crump style, revealed some interesting findings. 1) Age was positive correlated with the emotional impact and anxiety scales 2) Parents of females on average gave lower ratings of their child’s health that parents of males 3) Children who experience anaphylaxis are judged to have significantly higher levels of anxiety than those who have not. Implications for counselling...

31. Parental Estimates of HRQoL in Children Statistical analyses, Barry Crump style, revealed some interesting findings. 4) The “Number of symptoms” groups were associated with anxiety ratings, emotional impact, and dietary limitation scores 5) Children who have had symptoms in the last 12 months are judged to be in poorer health, but no less anxious or emotionally impacted. 6) Ten percentage of children who have had an anaphylactic reaction do not carry epi-pens

32. Parental Estimates of HRQoL in Children Statistical analyses, Barry Crump style, revealed some interesting findings. 7) The impact of peanut allergy on QoL is greater than other food types. Possibly due to peanuts being harder to avoid? 8) Finally, structure modelling of the data suggest that the anxiety of a potential reaction has a much greater impact on QoL than the physical reactions themselves.

33. Parental Estimates of HRQoL in Children Bon Appetite!