Out of Pocket Diabetes-Related Medical Expenses for Adolescents and Young Adults With Type 1 Diabetes: The SEARCH for Diabetes in Youth Study

The significant increase in the complexity of diabetes care over the last two decades is associated with a high economic burden (1), with almost one-quarter of adults with diabetes burdened with significant out of pocket expenses (OOPEs) (2). Little is known about the OOPEs for families of adolescents and young adults with type 1 diabetes. We therefore report the diabetes-related OOPEs for these families from the SEARCH for Diabetes in Youth (SEARCH) study and their association with demographic, socioeconomic, clinical, and health care characteristics.

A detailed description of the SEARCH study methods has previously been published (3). Participants had a baseline visit shortly after diabetes diagnosis and one or more follow-up visits; this report includes data from a follow-up visit between November 2011 and July 2015, at which time participants’ diabetes duration was >5 years. Participants ≥18 years old or a parent/guardian of participants <18 years old completed surveys, including questions about sociodemographics, diabetes treatment, health insurance, and OOPEs. The primary outcome was OOPEs in a typical month. Monthly OOPEs were captured in intervals of unequal lengths expressed in 2013 U.S. dollars as $0, $1–19, $20–49, $50–99, $100–199, and ≥$200.

Descriptive analyses were based on the midpoint of each interval. The midpoint of the last interval (≥$200) was estimated at $278, based on MarketScan data (4). Interval-censored regression models were fit assuming a Weibull distribution to evaluate the association between categories of OOPEs and covariates. The relationship between OOPEs and each covariate was assessed after adjustment for nonmodifiable characteristics (model 1), modifiable clinical factors (model 2), and health insurance categories (model 3). SAS 9.4 was used for analyses. …