Our study highlights the experience and educational needs of 92 food allergic patients in Ontario as well as the challenges faced by 6 of their allergists. The majority of our data were collected from academic practices (67%) indicating improvements may need to occur in these settings. Though these same conclusions may apply to community clinics as well, these did not make up the bulk of our sample. We found three key areas in food allergy management that require improvement.
Education and support of food allergic patients
Patients and caregivers indicated that both allergists and family physicians provided information about the recognition and treatment of allergic reactions, but both often failed to provide information on medical identification and/or support groups. This is important as evidence indicates that quality of life can be severely affected by food allergies in terms of restriction of social activities, increased fear and anxiety, lack of understanding by others, and feelings of isolation[5]. To improve support of patients, physicians need to better connect patients with reputable resources and support groups early on.
Patients/caregivers knowledge and confidence regarding the use of epinephrine auto-injectors
Significant deficiencies were evident in the areas of auto-injector education. Our study showed that 33% of patients were not shown how to use an auto-injector with a trainer device, and 43% were not asked to demonstrate the use of an auto-injector even after 4 or 5 visits with an allergist. Most allergists, however, identified this area as a teaching priority. Furthermore, only about 30% of patients or caregivers felt very confident about when and how to give an auto-injector. This finding is consistent with another study of 101 food allergic families, which found that only 32% correctly demonstrated the use of the auto-injector using a trainer [8]. Based on these findings, we recommend that every physician visit should include practice with an auto-injector training device, and review of indications for its use. Since time in clinic is limited, it would be helpful to provide auto-injector trainers and multimedia material for patients to use at home and for teaching others.
Changes needed at the community level
Findings of our study indicated that patients need to be supported beyond the clinic, perhaps through provision of standardized, accessible educational programs to train all caregivers, as well as primary care and specialist physicians. Previous studies have shown that knowledge and management of food allergy by primary care physicians and pediatricians are suboptimal. A 2000 study of 29 pediatricians at Mount Sinai Hospital in New York City found that only 18% were able to correctly demonstrate how to use an auto-injector [8]. Similarly, a 2008 study of 82 primary care and specialist physicians found that 23% were unable to correctly demonstrate use of the Epipen®, and 30% answered incorrectly on a question addressing the clinical presentation of anaphylaxis [9]. A study on the development of food allergy educational resources for primary care physicians, found that physicians preferred small group, on-site training [9]. Similar to first aid programs, we believe that a training program for patients should ideally be small group based, and moderated by trained personnel who can lead participants through scenarios. Most caregivers in our survey did not feel very confident using an auto-injector because they had never used one in a real situation, were fearful of the unknown, and/or were not clear on indications for its use. Similar to training physicians on how to deal with cardiac arrests, going through simulations of anaphylactic reactions may help participants gain practical knowledge and improve their self confidence.
Strengths and limitations
To our knowledge, this is the first Canadian study to assess the experiences and educational needs of food allergic patients and caregivers, and the challenges faced by their treating allergists. The study also successfully piloted a questionnaire that measured patient and caregiver educational experiences and needs, which may be used in future studies to assess the impact of intervention programs, and used as a self evaluation tool by allergists.
There were limitations in our sampling. Our questionnaire and interview samples were limited by the small number of participants. Recall bias is another limitation. We attempted to reduce recall bias by giving participants the choice of indicating that they did not recall what information they received. Seven participants choose this option. However, it is possible that participants may not accurately remember all information requested, as they were on average at their 4.6 visit with the allergist when they completed the questionnaire. For example, it is possible that when participants were asked what information they received at their diagnosis, they reported less information than they actually received. Furthermore, despite our efforts to recruit participants from a wide variety of practice settings, the majority of respondents were recruited from academic allergy clinics. Two of the 6 allergists were from a community practice, and only 15 people from their practices participated in the study. As a result, our findings may not be generalizable to community allergy practices. Broadening our sampling to these populations is planned for future studies. Lastly, our study did not inquire about the existing teaching resources at academic and community offices. To the best of our knowledge, there is no published study evaluating teaching resources at allergists' offices. Future study would be needed to clarify what optimal resources would be in this context.