Factors influencing time to case registration for youth with type 1 and type 2 diabetes: SEARCH for Diabetes in Youth Study

•SEARCH for Diabetes in Youth is the largest ongoing registry of diabetes in United States.•Plots for time from diagnosis to registration were developed and differences tested.•It took 2–3 times longer to register youth with type 2 versus type 1 diabetes.•It took longer to register if the referring provider was not an endocrinologist.•Diagnostic suspicion bias for type 2 diabetes in minority youth was detected.•Referral patterns reflect the decentralized nature of the U.S. health care system.

PurposeThe development of a sustainable pediatric diabetes surveillance system for the United States requires a better understanding of issues related to case ascertainment.MethodsUsing the SEARCH for Diabetes in Youth registry, we examined whether time from diabetes diagnosis to case registration differed by diabetes type, patient demographics, and the type of provider reporting the case to the study. Plots for time from diagnosis to registration were developed, and differences by key variables were examined using the log-rank test.ResultsCompared with time to registration for type 1 cases, it took 2.6 (95% confidence interval [CI], 2.5–2.6) times longer to register 50% of type 2 diabetes cases, and 2.3 (95% CI, 2.0–2.5) times longer to register 90% of type 2 cases. For type 1 diabetes cases, a longer time to registration was associated with older age, minority race/ethnicity, and cases, where the referring provider was not an endocrinologist. For type 2 diabetes cases, older age, non-Hispanic white race/ethnicity, and cases reported by providers other than an endocrinologist took longer to identify and register.ConclusionsThese findings highlight the need for continued childhood diabetes surveillance to identify future trends and influences on changes in prevalence and incidence.