How do young people with Type 1 diabetes (T1D) experience transition from pediatric to adult health care?
A national, population-based cohort study from the Norwegian Childhood Diabetes Registry (NCDR)

Objectives: To explore the experiences of young people with T1D on transition from pediatric to adult health services.

Methods: A questionnaire based on a mixed-method model was developed and sent to 784 adolescents/young adults with T1D, registered in NCDR and transferred to adult-health services within the last 2-4 years. Psychometric evaluation included explorative factor analysis, tests of intern reliability, test-retest reliability. The questionnaire addressed experiences with health-personnel, consultations, organization of services and preparedness for transfer. Most items had a five-point scale. Demographic data, questions on treatment-regimens and comorbidity are included.

Results: 321 (41.4%) answered the questionnaire. 57.6% of the respondents, 36.0% of the non-respondents were female. Mean HbA1C at time of transfer was 8.8% in respondents, 9.1% in non-respondents. Significant differences in patient experiences of pediatric and adult health care were found for continuity in services (p<0,001), interval between consultations (p<0,001), confidence in caretakers (p<0,001), all-in-all satisfaction (p<0,001).

News from 2022:
Submitted to Diabetic Medicine 07.04.2022, the paper: 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

Primary Investigator: Torild Skrivarhaug, MD, PhD, Professor

Co-investigators/participants:
Kristin Hodnekvam, MD (research fellow)

External collaborators:
Hilde Hestad Iversen, PhD, Norwegian Institute of Public Health
Cathrine Brunborg, Oslo Centre for Biostatistics and Epidemiology, Research Support Services, Oslo University Hospital, Norway
Osman Gani, PhD, Ass. Professor, Faculty of Medicine, UiO