Table 1

Quantitative data collection method, method description and outcome measures

MethodDescriptionThemes addressed or outcome measures
Chart reviewOf each outpatient department, all charts were reviewed of patients who transferred to adult care 2–4 years prior to data collection. Data from chart reviews were collected for four moments over time: second year before transfer (T1), year before transfer (T2), year after transfer (T3) and second year after transfer (T4). T3 and T4 data were only available for young people who transferred to an adult department within the same hospital. Patients with severe intellectual disabilities or known psychiatric problems were excluded. Background characteristics: Date of birth, date of diagnosis, gender, comorbidity.
Transfer: Date of transfer, current healthcare provider (department to which young person transferred is recorded/known).
Medical follow-up: No-show at first appointment in adult care, number of scheduled/missed consultations, number of planned and unplanned hospitalisations, emergency department visits.
Clinical outcomes:
  • Use of medications, in four categories: 1=aminosalicylates, 2=corticosteroids; 3=immunomodulators; 4=biologicals/biosimilars.

  • Disease activity during transfer, measured by global physician assessment in four categories (remission, mild, moderate and severe) dichotomised as being active (moderate or severe) or not (remission or mild), or measured by the Paediatric Ulcerative Colitis Activity Index (PUCAI)/weighted Paediatric Crohn's Disease Activity Index (wPCDAI), where a score of 10 or higher indicated active disease during transfer.

  • Whether young people had a relapse in the year before transfer (T2) or after transfer (T3).

SurveyAn invitation for a digital survey was sent to all patients whose charts were reviewed. Background characteristics: Educational level, type of education, disability benefits.
Healthcare-related outcomes:
  • Transfer experiences measured with the validated 18-item On Your Own Feet Transition Experience Scale with 5-point Likert scales.35.

  • Self-reported satisfaction with transition on a 1–10 scale.

  • Perceived patient-centredness measured with a subscale of the American Consumer Assessment of Health Plan Surveys (validated 5-item scale with 4-point Likert scales.36

Self-management-related outcomes:
  • Self-management measured with the validated 12-item Partners in Health Scale with 9-point Likert scales.37 38

  • Independence during consultations measured as self-reported independence on a 1–10 Visual Analogue Scale.

  • Self-efficacy measured with the validated 16-item On Your Own Feet Self-Efficacy Scale with 4-point Likert scales.39

  • Adherence to treatment measured with the validated 5-item Medication Adherence Rating Scale with 5-point Likert scales.40

  • Health-related quality of life measured with the validated 23-item Paediatric Quality of Life Inventory Young Adult with 5-point Likert scales.41