Improving the quality of life of families affected by food allergy: a psychological perspective

Improving the quality of life of families affected by food allergy: a psychological perspective Dr Rebecca Knibb Aston Research Centre for Child and Young People s Health Aston University, U.K. r.knibb@aston.ac.uk

Food Allergy Food allergy currently affects around 5-8% of children (Sicherer, 2011) Food allergy is different to other chronic conditions as the sufferer is generally well and in good health, but is continually at risk of a severe or life-threatening allergic reaction Management of food allergy can therefore be a burden due to the constant vigilance required to avoid known allergens and this may have an affect on quality of life and psychological distress

Impact of food allergy on quality of life Recent reviews of the literature on the effect of food allergy on people s lives concluded that food allergy has a significant impact on QoL and psychological distress such as worry, anxiety and depression. This affects: Children Adolescents Adults Parents (Marklund et al., 2007; Cummings et al., 2010; Morou et al., 2014)

Causes of the impact Unpredictability of food allergy Children are well the majority of the time Social Eating out Parties/school trips Family holidays Family dynamics Mothers affected more than fathers Sibling rivalry/bullying Economic issues Dietary cost Food labelling Not able to work

Mandell et al. (2005) interviewed parents of 17 children with peanut allergy who also had a history of anaphylaxis. They found that a lack of information at diagnosis increased both anxiety and uncertainty in managing the risk of accidental ingestion of the allergen. Parents have also reported high levels of worry about their child having an anaphylactic reaction and uncertainty around what to do if their child does go into anaphylactic shock (Akeson, Worth & Sheikh, 2007; Mandell, Curtis, Gold & Hardie, 2005).

Food allergy and self-efficacy Parental confidence in managing food allergy for their child may be able to explain some of the impact of food allergy on HRQoL. Confidence and the belief in one s capabilities to organize and execute the courses of action required to manage prospective situations has been defined as self-efficacy (Bandura, 1996 p. 2)

Food allergy and Self-Efficacy

Self-efficacy predicts quality of life in parents of children with food allergy Knibb et al PAI, in press Parents of children with clinically diagnosed food allergy (N=434) completed questionnaires using an online survey method Demographic and food allergy questionnaire Food Allergy Self-Efficacy Scale for Parents (FASE-P) Food Allergy Quality of Life Parental Burden Scale (FAQL-PB) GHQ-12 (to measure mental health) Food Allergy Independent Measure (FAIM) which measures perceived likelihood of a severe allergic reaction

Demographics %/Mean (SD) Demographics % Age of parent 42.21 (6.21) Gender: Female 94.7 Age of child 9.69 (4.65) Number of food allergies 2.35 (1.35) Number of children living at home with an allergy 1 88.0 2 10.1 3 1.4 Gender of allergic child: male 65.0 female 34.0 Number of food allergies: 1 30.4 2 22.4 More than 2 32.9 Asthma 71.4 Eczema 84.3 Hayfever 55.3 Foods allergic to peanut 77.2 nuts 66.1 cow s milk 27.4 egg 37.3 soya 6.9 fish 7.4 shellfish 7.8 History of anaphylaxis 52.1 Hospitilised due to reaction 65.0 Carry Adrenalin Auto Injector 94.7

Scales Mean (SD) Food allergy self-efficacy (FASE-P) 76.07 (11.37) Mean FASE-P sub-scale scores: Managing social activities (n=6 items) 68.85 (20.50) Precaution and prevention (n=6 items) 81.22 (11.82) Allergic treatment (n=2 items) 88.60 (11.17) Food allergen identification (n=3 items) 87.41 (11.37) The FASE has 21 items and is scored on a 0-100 scale. Total scores are divided by number of items to get a score range of 0-100. A higher score represents greater confidence. Parents were least confident in managing social activities and seeking information. Seeking information (n=4 items) 64.11 (16.83) Quality of life (FAQL-PB) 74.47 (20.98) General Health Questionnaire - 12 12.06 (5.1) FAIM 3.32 (.97) Parents had a mean GHQ score which was over the cutoff for being at risk of being diagnosed with mental illness.

Correlations with food allergy related quality of life Food allergy self-efficacy (FASE-P) -.563*** Managing social activities -.584*** Precaution and prevention -.451*** Allergic treatment -.243*** Food allergen identification -.219*** Seeking information -.280*** General Health Questionnaire.330*** FAIM.447*** Age of parent -.205** Age of child -.257*** Number of allergies.130* r N=434 parents Greater quality of life was significantly related to greater selfefficacy for food allergy management, better mental health, lower perceived likelihood of a severe reaction. Greater quality of life was significantly related older age in parent and child and fewer number of allergies. Significantly poorer quality of life was reported in parents of children who had asthma, eczema, egg allergy, history of anaphylaxis or hospitalisation due to food allergy. *p<0.05, **p<0.01, ***p<0.001

Predictors of food allergy related quality of life Step 1 β Step 2 β Age of parent -.089 -.013 Age of child -.171* -.115* Number of allergies.158* -.107* Egg allergy.115 -.096 Asthma -.118* -.003 Eczema -.027 -.029 Anaphylaxis -.061 -.088 Hospitilisation -.046 -.041 Food allergy self-efficacy -.451*** General health.128** FAIM.295*** F 3.77 24.30 In step 1 of a regression analysis only 7% of the variance in quality of life is explained by demographic and allergy characteristics. In step 2, with the addition of self-efficacy, mental health and the FAIM, 46% of the variance in quality of life is explained. Self-efficacy is the best predictor of quality of life as measured by the FAQL-PB. Adj R 2.068.457 *p<0.05, **p<0.01, ***p<0.001 R 2 change.385, F = 71.84, p<0.001

Predictors of food allergy related quality of life Food allergy self-efficacy (FASE-P) Managing social activities -.467*** Precaution and prevention -.159** β Allergic treatment -.013 Food allergen identification -.032 *p<0.05, **p<0.01, ***p<0.001 Seeking information -.066 F 45.840*** Adj R 2.35 Regression analysis with the subscales of the FASE-P resulted in 35% of the variance in food allergy related quality of life being explained. Confidence in managing social activities and precaution and prevention of allergic reactions appear to be the most important aspects of food allergy related quality of life. These were areas parents had the lowest ratings for

Conclusions Confidence in being able to manage your child s food allergy is important and was the biggest predictor of quality of life in this study. Self-efficacy was also associated with better parental mental health. Interventions to improve self-efficacy in parents of food allergic children should be explored as they may be able to improve food allergy related quality of life.

How can we reduce the impact of food allergy on the patient and the family and improve quality of life?

Food Allergy - Interventions Sicherer et al., J of Pediatrics, 2012, 160, 651-6 A food allergy educational programme can increase number of correct steps for AAI activation by parents of children with food allergy and significantly decrease number of allergic reactions (www.cofargroup.org/) Baptist et al., JACI 2012, 130, 263-265 A self-regulation intervention aimed to help parents identify potential concerns about their child with FA and contemplate coping mechanisms improved certain aspects of QoL

Measures completed at baseline and at 3 months: FAQL-PB and a Self- Efficacy scale for food allergy management.

Food Allergy - Interventions Polloni et al., PAI, 2014, 26, 87-90 Assessed reasons for 100 psychological treatments for FA for children, adolescents and family members: 40% - Emotional and social problems such as anxiety, worry, fear, stress, social isolation, poor selfesteem 40% - Difficulty managing FA, poor coping strategies for diet or treatment 18% - Eating problems, restricted diet, fear towards food 2% - Behavioural problems

Food Allergy Matters; intervention for children and adolescents DunnGalvin et al., 2014 Intervention based on CBT principles and food allergy specific developmental model of anxiety and risk in children Aims to increase confidence in coping, management of food allergy, quality of life and perception of control Children with FA and moderate to high FA burden on QoL measures, aged between 6-16years randomised to Control: usual clinic care (n=45) Intervention group: 1 hour of CBT per week for 6 weeks (n=27)

Food Allergy Matters; intervention for children and adolescents DunnGalvin et al., 2014 Measures taken at baseline, 2 months and 6 months Significant improvement in quality of life from baseline to six months in intervention group compared to controls Expectation of adverse events such as dying from his/her food allergy significantly decreased in intervention group Expectations of effectively treating him/herself or receiving effective treatment from others if an allergen is accidentally ingested significantly increased Children s perceptions of control significantly increased

Using Cognitive Behavioural Therapy to improve psychological outcomes for parents of food allergic children Knibb 2015, Healthcare http://www.mdpi.com/2227-9032/3/4/1194/pdf Aims of the study: 1. Investigate impact of food allergy on parents from a CBT perspective 2. Investigate whether CBT is an appropriate therapy for this group and to explore whether it can improve QoL in parents 3. Investigate whether CBT can reduce anxiety, depression, stress and worry in parents and improve coping

Cognitive Behavioural Therapy - Focuses on thoughts, behaviours, emotions and physical symptoms - What is causing and maintaining the problem? - How can we change behaviour and thoughts in order to improve how we feel? Excellent research evidence base for its effectiveness for: - Anxiety; panic - Worry and Generalised Anxiety Disorder - Depression - Obsessive Compulsive Disorder - Post Traumatic Stress Disorder

Methods Parents (all mothers; 5 cases and 6 controls) recruited from local allergy clinics. Cases had 12 sessions of CBT (1 hour/ week for 12 weeks); controls completed questionnaires only. Baseline measures - Stress (PSS) - General Mental Health (GHQ12) - General Quality of Life (WHOQOL-BREF) - Food Allergy related Quality of Life (FAQL-PB) - Anxiety and Depression (HADS) - Worry (PWS) Measures also taken at 6 weeks and 12 weeks

Parent and Child Characteristics CBT Group Control Group Age, mean in years (SD) 38.80 (4.38) 33.00 (8.46) Food Allergic Child Sex (n %) male 3 (60.0) 3 (50.0) female 2 (40.0) 3 (50.0) Age, mean in years (SD) 6.60 (3.36) 5.00 (3.58) Age range in years 2 9 2 12 Time since diagnosis, mean in years (SD) 5.67 (3.23) 3.87 (2.59) Food allergy, n (%) Peanut 3 (60.0) 4 (66.67) Treenuts 3 (60.0) 2 (33.33) Egg 5 (100.0) 0 Milk 3 (60.0) 3 (50.0) Fish 0 0 Soy 0 2 (33.33) Tomato 0 1 (16.67) Number of food allergies, n (%) 1 food 1 (20.0) 2 (33.33) 2 foods 1 (20.0) 3 (50.0) 3+ foods 3 (60.0) 1 (16.67) Type of symptoms, n (%) Respiratory 4 (80.0) 4 (66.67) Swelling of face, lips, tongue, eyes 2 (40.0) 4 (66.67) Gastrointestinal 5 (100.0) 5 (83.33) Skin rash/hives 3 (60.0) 5 (83.33) History of anaphylaxis 3 (60.0) 2 (33.33) Presence of asthma, hayfever, eczema 5 (100.0) 6 (100.0) Medication prescribed, n (%) Adrenalin auto-injector 3 (60.0) 2 (33.33) Antihistamines 6 (100.0) 6 (100.0) Demographic and food allergy details for parents and children in the CBT and control group.

Differences in CBT group and control group at the start of the intervention BASELINE Cases Controls Scale Mean (SD) Median Mean (SD) Median U Z P r WHOQoL-BREF Physical 3.71 (0.58) 3.17 4.32 (0.35) 4.43 25.5 1.94 0.05 0.58 Psychological 3.36 (0.56) 3.33 4.11 (0.33) 4.17 26.0 2.02 0.05 0.61 Social 3.40 (1.04) 3.33 4.33 (0.60) 4.50 23.0 1.47 0.18 Environment 3.58 (0.68) 3.13 4.10 (0.33) 4.00 20.0 0.92 0.43 FAQL-PB 86.40 (15.37) 80.00 48.67 (13.10) 51.50 0.00-2.74 0.004 0.83 PSS Stress Scale 28.80 (9.73) 32.00 18.25 (4.27) 17.00 4.0-1.48 0.19 PSWQ 56.60 (17.30) 63.00 46.33 (11.69) 48.00 8.5-1.19 0.25 HADS Anxiety 11.60 (3.36) 13.00 5.83 (2.32) 6.00 3.0-2.22 0.03 0.67 HADS Depression 7.00 (3.16) 8.00 1.67 (1.21) 1.50 2.5-2.30 0.017 0.69 GHQ-12 18.40 (7.50) 18.00 8.00 (3.90) 7.50 2.5-2.29 0.017 0.69

Differences in CBT group between the start and the end of the intervention CASES Baseline 12 weeks Scale Mean (SD) Median Mean (SD) Median T Z P r WHOQoL-BREF Physical 3.71 (0.58) 3.17 4.26 (0.26) 4.00 15.0 2.03 0.042 0.64 Psychological 3.36 (0.56) 3.33 3.87 (0.45) 3.83 14.0 1.76 0.078 Social 3.40 (1.04) 3.33 3.87 (0.84) 3.67 14.0 1.77 0.077 Environment 3.58 (0.68) 3.13 4.05 (0.36) 4.13 10.0 1.83 0.068 FAQL-PB 86.40 (15.37) 80.00 49.60 (11.33) 49.00 0.00-2.02 0.043 0.64 PSS Stress Scale 28.80 (9.73) 32.00 21.00 (8.86) 15.00 1.00-1.75 0.08 PSWQ 56.60 (17.30) 63.00 44.60 (15.49) 38.00 0.00-2.02 0.043 0.64 HADS Anxiety 11.60 (3.36) 13.00 6.40 (2.07) 7.00 0.00-2.03 0.042 0.64 HADS Depression 7.00 (3.16) 8.00 2.40 (1.95) 3.00 0.00-2.03 0.042 0.64 GHQ-12 18.40 (7.50) 18.00 5.20 (3.27) 5.00 0.00-2.03 0.042 0.64

Case Study Adam is 6 years old with allergies to very small quantities of peanut, milk and egg. He also has asthma which is generally well controlled. Adam s mother Jane feels as though she is solely responsible for Adam s allergies and making sure he does not have an accidental adverse reaction. She does all food shopping, reading of food labels and cooking herself. Jane does not let other people look after Adam, or let him go anywhere without her, apart from school as she feels she can not trust anyone else to know what to give Adam to eat.

Case Study They don t eat out or go out on social occasions very often as it is too much effort to plan. Jane thinks the risk of Adam having an allergic reaction is too high. Jane feels anxious a lot of the time about her son and worries that he might eat something that will kill him if she is not around to make sure he is ok. Jane is terrified of the thought of having to give Adam his Epi-Pen. She isn t sure if she would know when to do it and how to do it. What if she gives him adrenaline and he doesn t need it? Will this harm him?

Case Study Unhelpful thoughts/ beliefs: I am solely responsible for Adam s allergies and making sure he does not have an accidental adverse reaction I can not trust anyone else to know what to give Adam to eat The risk of Adam having an allergic reaction is very high I might hurt Adam if I give him adrenaline and he doesn t need it Behavioural and Cognitive Therapeutic techniques: Release control over Adam s allergies and let trusted others look after him for small amounts of time, building up to longer periods of time Education about risk, challenge thoughts about chances of having an allergic reaction when eating out based on past experiences Education about adrenaline and repeated practice with trainer AAI

Practical tips for clinic

Practical tips for clinic Reducing anxiety Knowledge: information sheets, management plans check understanding of these by parent and patient Practical skills: Trainer AAI demonstration of use to parent and child and emphasise repeat training! Follow-up appointments Signposting to further support, eg local support groups, Anaphylaxis Campaign, Allergy UK fact sheets certified by the information standard Allergywise online information course free to any parent who joins the Anaphylaxis Campaign; HCP course is 90 Addressing risk Clear information about what the risk is usually the parent has a heightened sense of risk; compare with risk of other things happening such as winning the lottery or being hit by a car

Practical tips for clinic Identifying someone who needs a referral Low scores on items on a self-efficacy scale or QoL scale Excessive worry or checking behaviour Unable to accept or understand the risk Unable to accept child has food allergy that can t be cured Extreme behaviour from patient or parent hypervigilance, not eating outside of the home, unnecessarily restricted diet Tackling a referral Normalise the feelings the parent/patient has Explain that seeing a psychologist allows them time to talk about any difficulties they are having and they won t be judged; lots of parents have been helped in this way with some simple tips to help them manage their allergy and the way they feel about it

Self-Efficacy Scale Scores below 70 for any item might indicate support is needed for this area of food allergy management Knibb et al, Clin Exp Allergy 2015: 45; 1681-1689

THANK YOU TO: All the families and children with food allergy who have taken part in these research projects Co-investigators and research assistants who have helped collect the data Derby Children s Hospital The Anaphylaxis Campaign

Thank you for listening, any questions? Dr Rebecca Knibb Aston Research Centre for Child and Young People s Health Aston University, U.K. r.knibb@aston.ac.uk