Health Care Transition in Youth With Type 1 Diabetes and an A1C >9%: Qualitative Analysis of Pre-Transition Perspectives

OBJECTIVE | To explore expectations for transition to adult care and experiences with transition planning among adolescents and young adults with type 1 diabetes and an A1C >9% at a tertiary care U.S. pediatric center. METHODS | We conducted semi-structured interviews in a purposive sample of patients 14–23 years of age who had had type 1 diabetes for at least 1 year and had an A1C >9%. A multidisciplinary team conducted iterative thematic analysis with deductive and inductive coding aided by NVivo software. RESULTS | Fourteen subjects participated (nine adolescents and five young adults, mean age 17.1 ± 3.2 years, 57% male, 79% Caucasian, 14% Hispanic, diabetes duration 8.2 ± 4.6 years, mean A1C 10.0 ± 0.8% for adolescents and 10.1 ± 0.7% for young adults). Qualitative analysis yielded four key themes. The first was lack of formal preparation; participants of all ages demonstrated a lack of preparation for transition and ignorance about the process, describing it as coming “out of the blue.” The second was a desire for delayed and gradual transition; participants wanted to defer being “serious” about transition to a later/uncertain date, with a preference to “wait until I’m older” among all ages. Participants described ideal transition as a gradual process, taking place “a little at a time.” The third was attachment to pediatric providers; participants demonstrated a nearly universal attachment to and “familiarity” with their pediatric diabetes care providers and expressed worries about an “uncomfortable” transition to adult providers. The fourth was concern about an impersonal adult care setting: participants perceived adult care as “formal,” “scarier,” and “tougher,” with increased criticism about poor control; participants expressed fear that adult providers would not “know me” or appreciate “my diabetes journey.” CONCLUSION | We demonstrated a lack of transition preparation and anxiety about transition and adult care among youth with type 1 diabetes and elevated A1C. Our results may help guide early, iterative pediatric transition counseling, with a special focus on addressing attachment and fears about adult diabetes care.