We understand little about motivations of families who choose oral immunotherapy (OIT), particularly outside of the research setting. Understanding these goals may guide development of future therapies.
Parents of children treated with OIT were recruited for a web survey using social media and food allergy advocacy list serves.
123 parents of children aged 1-19 years participated. 33% were in OIT maintenance, 34% in dose build-up, 22% had finished maintenance, and 11% discontinued OIT prematurely. The majority of subjects received non-research based OIT (65%).
Sixty-five percent agreed with a definition of success as “avoiding the food but having a lower rate of reaction than prior to treatment,” while only 19% agreed that success was “eating the allergenic food but having a higher rate of reaction.”
Asked about their primary goal for starting OIT, 75% of respondents chose “Reducing the risk of a fatal food reaction,” 12% “Reducing the hassle of strict avoidance,” and 11% “Being able to incorporate the food into the diet normally.” A significant minority thought there was a high likelihood that their child would have a fatal reaction prior to the initiation of OIT: 28% thought the risk was at least 1 in 100, 18% 1 in 1000, and 54% 1 in 10,000 or less.
CONCLUSIONS: Families who pursue OIT are driven strongly by anxiety about fatal reactions and define success as lowering the rate of allergic reactions to a food. It appears that some families may be motivated by inflated assessment of the danger of untreated food allergy.