Abstract
Introduction: The Treatment Options for Type 2 Diabetes in Adolescents and Youth (TODAY) trial examined the effects of three treatment arms in a group of racially and ethnically diverse adolescents and youth with type 2 diabetes mellitus. TODAY2 was an observational follow-up study reporting outcomes and complications in these participants after having diabetes for approximately 13 years. Participant retention was essential to fulfill this objective. This report describes the motivations and problems participants self-reported related to continuing in this study. Methods: The TODAY2 retention survey was administered to participants with a mean age of 27 years, 36% non-Hispanic black, 18% non-Hispanic white, 39% Hispanic, 52% public, and 35% private healthcare coverage, who completed the last study visit (63.8% of original TODAY cohort). The survey listed potential benefits and barriers to staying in the trial. Participants indicated agreement or disagreement with each statement using a four-point Likert-type scale. Results: More than 93% of survey responders agreed with the benefits listed for staying in TODAY2. The most cited reason for staying in the study was related to the strong relationship that participants had with study staff. The common barriers to attending trial visits were tending to other medical problems, fear of disappointing study staff, and school/work scheduling conflicts. Participants with public healthcare coverage were more likely to endorse benefits related to diabetes care (e.g., getting the latest test results, staying motivated to care for my diabetes) and monetary compensation, whereas participants with poor glycemic control cited that a barrier to attending study visits was “fear of disappointing” study staff. Conclusion: In a racially and ethnically diverse population of youth-onset type 2 diabetes, benefits and barriers associated with long-term retention are described. These findings can be used to help inform future retention strategies for young adults in clinical trials.
