Community opinions regarding oral immunotherapy for food allergies.

Background: Food oral immunotherapy (OIT) is a promising but still investigational new therapy for food allergy.

Objective: We sought to investigate beliefs and opinions among OIT participants and nonparticipants to better understand community awareness of this therapy.

Methods: A 30-question on-line survey was administered to members, website visitors, and social media followers of the Kids with Food Allergy Foundation. Questions inquired about general knowledge and attitudes about OIT, its reported safety and efficacy, complications, insurance coverage, and its Food and Drug Administration (FDA) approval status.

Results: Among 1,274 survey respondents, 15.9% had discussed OIT as a treatment option with their allergy provider. Five percent (n = 64) of respondents reported that their child was currently participating in OIT, including 73.4% (n = 47) in a private practice setting. Participants reported varying degrees of being informed about OIT safety (85%), efficacy (46.4% told unrestricted ingestion), risks (relapse 53.4%, eosinophilic esophagitis 3.5%, oral allergy syndrome 10.7%, and failure 56.9%). Significantly fewer participants than nonparticipants agreed that OIT's present safety, efficacy, risks, and approval status would dissuade participation. Significantly fewer participants agreed that OIT should not be offered outside the research setting without definitive proof of both its safety and efficacy.

Conclusion: In this exploratory study, differences in beliefs and opinions existed between OIT participants and nonparticipants. Among participants, there were also significant differences in beliefs among academic versus nonacademic participants. Accurate and complete information about OIT safety, efficacy, risks, and approval status was not universally conveyed.