Parental Perceptions of Children’s Anxiety and Quality of Life Jason Landon 1 , Inga Stünzner 2 , Penny Jorgensen 2 , an

1. Parental Perceptions of Children’s Anxiety and Quality of Life Jason Landon1, Inga Stünzner2, Penny Jorgensen2, and Daniel Shepherd3 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: Physical Health QoL Psychological Health Social Relationships Environmental Factors

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”.

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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 QoLis 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!