Development and validation of a questionnaire to assess young patients' experiences with diabetes care and transition

Abstract

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. 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 2009-2012 and had been receiving adult health care for at least two years. The data quality was analysed, factor analysis were performed and the internal reliability, test-retest reliability and construct validity were determined. 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 0.64-0.92. 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.