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

Abstract

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.

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

“…12-14 A questionnaire was developed by the authors to assess experiences before and after transfer to adult diabetes care. 15,16 Clinical data were collected from annual registrations during the previous 4 years in the NCDR and from medical records for every year in adult diabetes care, spanning a mean of 7.5 years. The questionnaire was translated from Norwegian to English for the purpose of publication (Appendix S1 and S2).…”

“…The instrument has been validated previously and includes seven subscales on experiences with paediatric diabetes care, adult diabetes care and the transition between them. 15 The content of the subscales is presented in Appendix S1 and S2.…”

“…Combined with the patient-reported experiences recorded on the questionnaires, a range of complementary data was available. 15 Possible limitations of this study are related to the different sources used to collect data. Significant efforts were made to achieve accurate data from all consultations in adult care and to convert them into annual registrations comparable with the standardised paediatric data in the NCDR.…”

A collaborative comparison of international pediatric diabetes registries

“…Only DPV and SWEET collect CGM raw data files providing information on daily and ambulatory glucose profiles though only for a subgroup of individuals. PROM and/or PREM are currently collected by DPV, NCDR, NPDA, and T1DX‐QI using surveys with questions on health‐related quality of life, psychological well‐being, and experience with diabetes care 25–27 …”

“…using surveys with questions on health-related quality of life, psychological well-being, and experience with diabetes care. [25][26][27] Overall, data completeness within each registry in the pediatric population is high with regard to indicators of diabetes control, daily insulin dose, and documentation of treatment modality (Table 4). With…”