Community opinions regarding oral immunotherapy for food allergies Russell S. Traister, MD, PhD *; Todd D. Green, MD *; Lynda Mitchell, MA ; and Matthew Greenhawt, MD, MBA, MSc * Division of Pulmonary Medicine, Allergy and Immunology, Children’s Hospital of Pittsburgh of UPMC, Pittsburgh, Pennsylvania Kids With Food Allergies Foundation, Doylestown, Pennsylvania University of Michigan Health Systems, Division of Allergy and Clinical Immunology, University of Michigan Medical School, Ann Arbor, Michigan ARTICLE INFO Article history: Received for publication June 27, 2012. Received in revised form August 13, 2012. Accepted for publication August 20, 2012. ABSTRACT 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 esoph- agitis 3.5%, oral allergy syndrome 10.7%, and failure 56.9%). Significantly fewer participants than nonpartic- ipants 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. 2012 American College of Allergy, Asthma & Immunology. Published by Elsevier Inc. All rights reserved. Introduction Food allergy is an important public health problem affecting between 4 and 8% of the pediatric population, with dramatic effects on quality of life. 1-4 Current management strategies include only avoidance, because no treatment is available. Multiple treatment strategies are under investigation, including oral immunotherapy (OIT), however. 5 Food OIT has been under investigation for the past few years in the United States and internationally, and though preliminary results are promising, many unknowns exist pertain- ing to the long-term safety, feasibility, cost efficiency, and overall efficacy of food OIT. 6-19 Though food OIT is an investigational therapy, preliminary trial results have received significant mainstream media attention. Some of the most prominent researchers in this area, however, have highlighted the unresolved issues regarding safety and effi- cacy and have made the case that food OIT is an investigational therapy not yet ready for widespread clinical use until it is better studied. 5,6,20 Despite such concerns, practices in several regions of the United States currently offer and market OIT outside the re- search setting, as an available treatment for food allergy. Parental awareness of OIT, attitudes toward OIT, and potential motivating beliefs regarding participation in OIT have not been well studied among the general food allergic community. 6,21,22 One previous study of early participants in a National Institutes of Health–spon- sored academic center found that parents who had higher anxiety about negative outcomes from accidental ingestion were more likely to consent to experimental therapy for their child. 21 We therefore designed this study to explore and compare attitudes and beliefs about OIT among reported participants and nonparticipants from a population selected from a large food allergy support and advocacy organization. Reprints: Matthew Greenhawt, MD, MBA, MSc, Division of Allergy and Clinical Immunology, University of Michigan Health System, 24 Frank Lloyd Wright Dr., Lobby H-2100, Box 442, Ann Arbor, MI 48106; E-mail: mgreenha@med.umich.edu. Disclosures: Authors have nothing to disclose. Funding Sources: Dr. Greenhawt was supported in part by grant number UL1RR024986 from the National Center for Research Resources. The content is solely the responsibility of the authors and does not necessarily represent the official views of NCRR or the National Institutes of Health. Ann Allergy Asthma Immunol 109 (2012) 319–323 Contents lists available at SciVerse ScienceDirect 1081-1206/12/$36.00 - see front matter 2012 American College of Allergy, Asthma & Immunology. Published by Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.anai.2012.08.012