Health Care Transition for Young Adults With Type 1 Diabetes: Stakeholder Engagement for Defining Optimal Outcomes

J Pediatr Psychol. 2017 Oct 1;42(9):970-982. doi: 10.1093/jpepsy/jsx076.


Objectives: Research on the transition to adult care for young adults with type 1 diabetes (T1D) emphasizes transition readiness, with less emphasis on transition outcomes. The relatively few studies that focus on outcomes use a wide variety of measures with little reliance on stakeholder engagement for measure selection.

Methods: This study engaged multiple stakeholders (i.e., young adults with T1D, parents, pediatric and adult health care providers, and experts) in qualitative interviews to identify the content domain for developing a multidimensional measure of health care transition (HCT) outcomes.

Results: The following constructs were identified for a planned measure of HCT outcomes: biomedical markers of T1D control; T1D knowledge/skills; navigation of a new health care system; integration of T1D into emerging adult roles; balance of parental involvement with autonomy; and "ownership" of T1D self-management.

Discussion: The results can guide creation of an initial item pool for a multidimensional profile of HCT outcomes.

Keywords: health care transition; transition outcomes; type 1 diabetes; young adulthood.

MeSH terms

  • Adolescent
  • Adult
  • Delivery of Health Care / organization & administration*
  • Diabetes Mellitus, Type 1 / therapy*
  • Female
  • Humans
  • Male
  • Middle Aged
  • Outcome and Process Assessment, Health Care
  • Parents
  • Qualitative Research
  • Self-Management
  • Stakeholder Participation
  • Transition to Adult Care / organization & administration*
  • Young Adult