Overview of the achievements of the GAPS project
Phase one of the GAPS project involved a global survey of 3236 adults with food allergy and caregivers of children with food allergy, from more than 20 countries. The survey found that over 70% of participants experienced food allergy-related mental health distress but less then 20% had been able to access any support, with significant cross-country differences. The findings have been published in three papers. The first paper reporting on the global scale of psychological support needs was published in Allergy. A paper on the predictors of psychological distress has been published in Clinical and Translational Allergy. A final paper on mental health experiences has been published in Journal of Allergy and Clinical Immunology in Practice. Phase two of the study involved interviews and a follow-up global survey. Interviews explored the impact of food allergy and experiences of psychological support in 7 countries (Australia, Brazil, Canada, France, Italy, UK and US). We interviewed 231 participants (114 adults with food allergy; 117 caregivers of children with food allergy) and have analysed the huge amount of unique data this provided us with. A paper on the methodology for this global undertaking was published in Clinical and Experimental Allergy. A paper on the impact of food allergy on adults in the UK has been published in Qualitative Health Research and a paper on experiences of healthcare services in adults and caregivers in the UK is currently under review. We also have a paper under review reporting on the analysis of the interviews to inform a psychological intervention. Further papers to disseminate findings from the different countries are planned. We also ran a follow-up survey as part of Phase two of GAPS. We have collected data from nearly 2000 adults with food allergy and caregivers of children with food allergy. In this survey, almost all participants reported experiencing at least one type of FA-related distress and similar low levels of participants had accessed support. We are currently completing the analysis of this data. Phase three involved the development and piloting of an intervention. We have developed FACETS (Food Allergy Coping Empowerment Tools and Support) for adults with food allergy and caregivers of children with food allergy. Content for FACETS was written based on findings from our surveys and interviews. We will be piloting its effectiveness in the coming months before making it freely available to patients and caregivers.
Phase 1: Global Survey
The first phase of the GAPS project involved a global survey to explore the psychological impact of food allergy (FA) and psychological support needs.
Participants (n=1329 adults with FA; n=1907 caregivers of children with FA) from >20 countries were recruited through patient organisations, social media advertisements and online survey panels to complete an online survey. Surveys were available in six languages.
A total of 67.7% of adults and 77.2% of caregivers reported direct experience, and 51.6% of caregivers said their child had experienced FA-related psychological distress, with significant differences across countries. The most commonly reported issue was anxiety about having an allergic reaction. Less than 20% had been assessed for FA-related psychological distress. The United Kingdom, Australia and Brazil had the highest number of participants reporting distress. The most commonly reported barrier to seeing a mental health professional was cost.
Predictors of distress were also explored, as understanding what variables are associated with psychological distress can help providers direct support. Females reported significantly more types of distress than males. For adults, caregivers, and children, a higher number of FAs, FA-related comorbidities, and allergic symptoms correlated with more types of distress. There were significant differences between countries; participants in Australia, Brazil, Canada, and the United Kingdom (UK) consistently reporting more types of distress than European countries or the Unites States (US).
We also assessed the mental health treatment experiences of caregivers and adults with FA. Overall, 21.6% (411/1907) of caregivers and 22.8% (304/1329) of adults reported receiving FA-related mental health treatment.
Cognitive behavioral therapy was the most common treatment reported by caregivers (30.1%) and adults (33.2%). Most caregivers and adults were at least somewhat satisfied with their experience (75.9% and 72.4%, respectively) and perceived that mental health providers were at least somewhat FA knowledgeable (62.5% and 60.06%, respectively).
Caregiver and adult perceptions of knowledge significantly varied by country with lowest percentages in Australia (31.8% and 33.4%, respectively) and highest in Portugal (96.0% and 90.9%, respectively). Most caregivers (72.1%) and adults (75.0%) reported mental health providers were at least somewhat helpful at addressing FA concerns.
Most caregivers and adults reported satisfaction with FA-related mental health treatment and believed providers were somewhat FA knowledgeable. However, inter-country attitudes about FA-related mental health treatment experiences were noted.
Phase 2: Interviews
We have carried out 231 semi-structured interviews across 7 countries, to explore the impact of food allergy and experiences with allergy services and psychological support.
Interviews have been analysed within and across countries using template, thematic and content analysis. Results show that experiences with healthcare systems varies across countries, but many participants discussed the lack of knowledge about food allergy, little understanding of the psychological impact of food allergy and difficulties in accessing psychological support.
We have published our findings on adults in the UK (Roleston et al. "It\'s a permanent struggle to manage it really": Psychological burden and coping strategies of adults living with food allergy. Qualitative Health Research, 2025. In press. https://doi.org/10.1177/10497323251320839)
We have further papers under review or in preparation.
| Country | Adults | Caregivers | Total |
|---|---|---|---|
| Australia | 23 | 26 | 49 |
| Brazil | 12 | 10 | 22 |
| Canada | 21 | 16 | 37 |
| France | 10 | 16 | 26 |
| Italy | 14 | 17 | 31 |
| United Kingdom | 22 | 17 | 39 |
| United States | 12 | 15 | 27 |
| Total | 114 | 117 | 231 |
Phase 2: Follow-up Survey
We have carried out a follow-up global survey to provide a current perspective on barriers and access to mental health support for food allergy. In this survey we also asked participants to grade frequency of experiencing distress and we included validated food allergy quality of life scales.
Participants (n=979 adults with FA; n=958 caregivers of children with FA from 17 countries) were recruited through patient organisations, social media advertisements and online survey panels to complete an online survey. Surveys were available in six languages.
Almost all participants (99%) said they had experienced at least one type of food allergy related psychological distress. We asked participants to rate frequency of experiencing distress, from 0 (never) to 4 (a lot), across 23 adult and 24 caregiver distress types. Most common type of distress and distress experienced most frequently can be seen below. Participants also completed the Food Allergy Quality of Life Questionnaires (FAQLQ) (scored on a range from 0=never to 6=extremely). Scores showed moderate impact. Quality of life scores correlated significantly with level of distress.
Just over half of participants did not feel the need to see a mental health professional but 15% of adults and 21% of caregivers did want to see someone for support and had not been able to access healthcare. Even if they did not want to see a psychologist, participants said they still wanted some form of support to manage food-allergy related anxiety.
Most Common Type of Distress
Distress Experienced Most Frequently
Phase 3: FACETS Intervention
An important phase of the GAPS project involves the development of an online psychological intervention to support patients and families manage food allergy. Interviews carried out for the GAPS study in Australia, Canada, UK and the US with adults with food allergy (n=76) and caregivers of children with food allergy (n=63) have been analysed. Codes were assigned to the areas people said they wanted support with and the most popular areas have been the focus of the new online intervention.
We have called the online intervention FACETS, which stands for Food Allergy Coping, Empowerment Tools and Support. It is a modular online support tool to help with managing things like anxiety related to food allergy and communicating about food allergy.
FACETS is currently being piloted and it will be made available for patients and caregivers.
Current Work on the GAPS Project
- We are piloting our FACETS intervention with adults with food allergy and caregivers of children with food allergy to see if this helps reduce anxiety, improve self-efficacy and quality of life.
- We are analysing the findings of the follow-up survey and the interviews.
- We are planning to create additional modules and translate FACETS into different languages.
