Food allergy management from the perspective of patients, caregivers and allergists: a qualitative study

Background

Long term management of food allergy is suboptimal ^1,2,3. Our study aims to provide direction for improvement, by evaluating the current state of food allergy management from the perspective of allergists, food allergic patients or their caregivers in outpatient settings in Ontario.

Materials and methods

This two-part study included an questionnaire completed by food allergic families to explore what information they received on food allergy, their confidence around self-management, and their learning needs; and a qualitative interview with allergists to explore their perception of teaching priorities, and the challenges and strategies in food allergy management. Using convenience sampling, participants were recruited from allergy clinics across Ontario. Analyses included descriptive statistics and frequency analysis (quantitative data) and grounded theory methodology (qualitative data) ^4,5.

Results

Six allergists and 92 of their food allergic families, from Toronto, Hamilton, London, Kitchener, and Kingston, participated. Key areas requiring improvement in food allergy management were identified from the survey: 33% of families were not shown how to use an epinephrine auto injector with a trainer, 57% were asked to demonstrate its use with an auto injector despite being on average at their 5th visit, and 30% felt confident about when and how to administer an auto-injector. Many newly diagnosed families did not receive sufficient information during the visit, including medic alert identification (50%) and information about support groups (21%). Interviews with allergists indicated that a key challenge was limitation in time and nursing resource.

Conclusions

Our study highlights the experiences and educational needs of 92 food allergic families in Ontario, and the challenges faced by the 6 allergists managing them. Identified gaps could be addressed through the provision of practice sessions with an auto-injector training device; and developing training materials to simulate anaphylactic reactions, which may improve patients’ confidence in self management.