Aim
To describe the development and validation of a questionnaire in a national Norwegian population‐based cohort study designed to assess the experiences of young people with type 1 diabetes who had made the transition from paediatric to adult diabetes care.
Methods
The questionnaire was developed by the authors based on literature searches, focus group interviews, discussions with experts and cognitive interviews. We included 776 individuals with type 1 diabetes who were last registered in the Norwegian Childhood Diabetes Registry between 2009 and 2012 and had been receiving adult health care for at least 2 years. The data quality was analysed, factor analysis was performed, and the internal reliability, test‐retest reliability and construct validity were determined.
Results
The response rate was 321 patients (41.4%); 57.6% were female, and the average age at recruitment was 22.9 ± 1.2 years. Seven factors were identified. Satisfactory evidence was provided for the internal consistency, reliability and construct validity of the questionnaire. All scales met the criterion of Cronbach's alpha above 0.4. The test‐retest correlations ranged from 0.64 to 0.92.
Conclusion
The thorough validation of the questionnaire proved satisfactory and indicated that it may be of value for further studies measuring patients' experiences with diabetes care and transition.
Aims
The 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.
Methods
This 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.
Results
A 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.
Conclusions
This 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.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.