Can interventions make a difference?
As a Health Psychologist working in research and practice around allergy since 1995, it has become clear to me that food allergy is quite unique as a long-term condition, in its presentation and management…
Those with food allergy do not suffer from symptoms day-to-day but they do live continually with the risk of a severe or life-threatening allergic reaction. The risk of dying from an anaphylactic reaction related to food is relatively low: around 20 people per year die from an allergic reaction to food in the UK (Pumphrey & Gowland, 2000) compared to around 1100 deaths from asthma (Asthma UK). But given the impact food allergy can have on quality of life, the development and delivery of interventions has the potential to significantly improve the lives of those affected.
As yet there are no randomised controlled trials (RCTs) – the gold standard in intervention studies – of patients with food allergy. There are however some promising observational cross-sectional questionnaire studies, and RCTs with parents. A freely available online food allergy educational programme was developed for parents, and has increased the number of correct steps for Adrenaline Auto-Injector activation, and decreased the number of allergic reactions (Sicherer et al., 2012). A half-day workshop with five- to seven-year-olds with allergies and their parents resulted in increased ‘parent perceived competence in coping’ and decreased ‘burden’ four to eight weeks later (Le Bovidge et al., 2008).
An intervention with a firmer basis in psychological theory applied a self-regulation model to guide discussion between healthcare practitioners and parents (Baptist et al., 2012). Parents were encouraged to acknowledge their allergy concerns, discuss the likelihood of that concern occurring, critically appraise potential barriers to dealing with the situation, and discuss coping mechanisms. Attendees were randomly assigned to a control group who received a phone call two weeks later to have questions answered, or an intervention group who received three phone calls at two-week intervals from a nurse trained in self-regulation for chronic disease management. The intervention group reported improvement in feeling anxious about food allergy; frustrated by others not knowing about food allergy; worried they can’t help their child experiencing a reaction; and frightened that their child might have a reaction. Self-efficacy and confidence in being able to manage their child’s food allergy as measured with a non-validated questionnaire did not improve. Validated self-efficacy scales now exist (DunnGalvin & Greenhawt; Knibb et al., 2015) and would be useful tools to further explore intervention effectiveness.
These low-level intervention studies have small participant numbers and don’t report whether effects are clinically meaningful or long-lasting, yet they may be helpful for parents who need a little guidance to reduce anxiety.
Cognitive Behavioural Therapy (CBT) pilot study
CBT is a relatively short-term therapy aiming to change behaviour and thoughts in order to improve feelings, so may be more beneficial for parents with high levels of anxiety, depression, worry and stress than educational programmes. Given CBT’s excellent evidence base for a range of mental health issues, I sought to investigate whether it was a suitable therapy for food allergy in a pilot study with mothers recruited from allergy clinics (Knibb, 2015). Five mothers had one hour of CBT a week for 12 weeks in their home or at the local University, and six mothers who did not want CBT completed questionnaires for comparison. The box provides an example case study of some of the difficulties faced by the mothers I saw. I developed a model to describe how the feelings and behaviours of parents had developed, what was maintaining them and what could be changed to help parents feel better (Knibb, 2015).
Let’s turn to some examples of the targets parents had, and the CBT-based techniques used to help them. If a target was ‘I would like to feel less anxious about my son having a bad reaction and more confident in knowing what to do if he does’, we might deploy graded exposure to information about anaphylactic shock to reduce anxiety, including watching educational videos; psychoeducation about what might happen if a child goes into anaphylactic shock; roleplay using a trainer AAI with the parent and therapist, and by the parent with their child. A target to reduce phone checking might lead to an experiment testing out the consequences of that. If a target was to worry less about the child becoming more independent and to trust them to take more responsibility for their allergies, we might suggest a ‘Worry Tree’ and other exercises showing the consequences of suppressing thoughts. This might be coupled with an experiment to see what happens if the child reads their own food labels and decides what they can eat, and a roleplay with the child showing their friends how to use the trainer AAI in an emergency.
The pilot study resulted in improved quality of life and reduced stress, worry, anxiety and depression at the end of therapy. The mothers who received therapy were no different to the comparison group on any measure by the end of therapy. While this was a small proof of concept study requiring further investigation, the use of CBT does appear to improve psychosocial outcomes, and CBT is now being used and tested in clinical settings.
CBT in clinics
The first RCT of a CBT-based approach provided 200 mothers with a CBT-based risk communication session by clinicians with training in CBT (Boyle et al., 2017). After six weeks, there was no overall difference in anxiety between the CBT group and the control group, but mothers with medium to high anxiety had significantly reduced anxiety. Mothers reported feeling that their child was at lower risk of having a reaction, and salivary cortisol (a measure of stress) was significantly lower.
It is clear then that parents with high levels of stress and anxiety do seem to benefit from a CBT-based approach, but UK funding for dedicated psychologists to work with allergy patients is very limited. Two allergy clinics that do have dedicated psychological services are at Southampton General Hospital (since 2014) and the Evelina London Children’s Hospital (since 2016). These services are very popular; in the first six months 71 new referrals were made to the psychology service at the Evelina and 43 patients had been seen for treatment. Demand on the service is so high that all referred patients are triaged and a ‘stepped care’ system is in place to deliver treatment.
Both services treat patients and families through a mix of telephone support, workshops and one-to-one individual or family therapy. Patients and parents come with a wide range of issues such as difficulty adjusting to the diagnosis; anxiety related to eating, food challenges and use of the AAI; anxiety related to eating at school and outside of the home; low mood; low self-esteem; anger, frustration and feeling different; poor social functioning; distress following an anaphylactic reaction; sleep problems; and bullying. Initial evaluations of these services show that they are much needed and help patients and families reduce distress and live a better quality of life (Knibb et al., 2019).
Not all regions in the UK have the benefit of such services. Much of the vital work to help patients and families is provided by doctors, nurse specialists and dieticians, who do not have training in delivery of psychological interventions and have limited time in clinic. Support groups and patient organisations often fill the gap to provide information and support once a diagnosis has been made. The Anaphylaxis Campaign and Allergy UK, the main patient organisations for allergy in the UK, facilitate local support groups, run a helpline and have useful and accurate information on their websites, with help sheets. According to a recent study, being part of a support group helped adolescents to share their experiences, which reduced feelings of isolation and being different, improved their self-esteem and enabled greater confidence in managing their allergy and communicating about it with adults (Jones et al., 2018).
No clear pathway
Funding for dedicated psychological services for food allergy is much needed to ensure families who need support are seen in a timely fashion. Early intervention in food allergy management is vital to prevent escalation of anxiety, which can result in severe restrictions on a patient’s life. The stepped care approach adopted by the Evelina London Children’s Hospital is likely to be the most cost-effective way to help patients and families. For those without the advantage of a dedicated service there is often no clear pathway to referral, and those who do get referred can have a long wait to be seen.
Robust evidence that CBT-based approaches work will enable NHS Trusts to build a business case for funding dedicated psychological services. RCTs need to be supported by the ongoing qualitative work to explore what CBT should comprise of for this group. Funding for posts may also encourage more health and clinical psychologists to work in this fascinating area to support the growing number who really need our help.
BOX: ‘Her greatest fear is that her son will die’
John is a nine-year-old boy with allergies to very small quantities of peanut, milk and egg. He also has asthma which is generally well controlled. For his food allergies he has an Adrenaline Auto-Injector (AAI) and anti-histamine. John had one serious anaphylactic reaction when he was five years old and had to be taken to hospital. This was a very scary event for John and his parents, and since then, John’s mother Kate has felt increasingly anxious about her son’s allergies.
Kate likes to have control over John’s allergy management. She gets worried if John is not with her and is very anxious if she has to ask a friend to look after him. She believes that if he has a reaction when she is not there it will be her fault and no one will know what to do to treat John.
Kate does all food shopping, reading of food labels and cooking herself. They don’t eat out very often but when they do Kate looks online to check out where they are going to eat and talks to the chef at the restaurant. They rarely go out on social occasions as it is too much effort to plan and they never go on holiday abroad.
Kate feels anxious about her son lot of the time and worries that he might eat something that will kill him if she is not around to make sure he is ok. She is terrified of the thought of having to give him his AAI. She isn’t sure if she would know when to do it and how. She constantly checks her phone when John is at school, in case school ring. She doesn’t trust that school would know what to do if John had a reaction and she is worried he might be bullied because of his allergies. Kate often asks John if he feels ok after eating and regularly checks his appearance to make sure he has no swelling or rash. Her greatest fear is that her son will die.
Dr Rebecca Knibb is a Reader in Psychology at Aston University
This article is part of a special feature.
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