Do adolescents and emerging adults receive the diabetes care they truly need? A nationwide study of the quality of diabetes health care during the transition from paediatric to adult care

AimsThe aim of this study was to assess the paediatric and adult diabetes care provided to adolescents and young adults with childhood-onset type 1 diabetes during the transition. MethodsThis nationwide population-based cohort study included 776 individuals with type 1 diabetes who were last registered in the Norwegian Childhood Diabetes Registry (NCDR) between 2009 and 2012 and had received adult health care for at least 2 years. The patients' experiences were reported in a validated questionnaire. Clinical data from the annual registrations in the NCDR were coupled with data from the medical records in adult diabetes care. The longitudinal measures of glycaemic control were analysed using a growth mixture model. ResultsA total of 321 young people answered the questionnaire and provided written informed consent for the collection of their data from their medical records. The mean age at transfer was 18.0 years (range = 15.0-23.5 years), and the mean age at participation was 22.7 years (range = 20.9-26.7 years). Significant differences (p < 0.001) in patient experiences were found between paediatric and adult diabetes care in several areas: contact with health-care personnel, continuity of care, interval between consultations and overall satisfaction. Registry and medical records data confirmed the patient-reported experiences. The longitudinal analyses identified two groups with distinctly different trajectories of glycaemic outcome over time. Patient-provider continuity and perceived preparedness for transfer were the most influential predictors. ConclusionsThis study highlights several areas to be addressed for improving health care and the transition to adult diabetes care in adolescents and young adults with type 1 diabetes, including provider continuity, individualised care and involvement of multidisciplinary teams.