Overview

Medical advances have allowed many more children and youth with medical complexity (CMC) to survive well into adulthood. However, this has not been matched with increases in knowledge of complex conditions or the availability of supports as they transition into the adult care system. The goal of this randomized control trial is to compare intensive transition support from a transition team, led by an advance practice nurse, during transition to adult care for 2 years, with usual care in CMC. Participants assigned to the intervention group will be offered support in care planning, receiving funding, and connecting with a primary care provider and adult subspecialists.

The main questions it aims to answer are:

1. Does intensive transition support improve the patient's continuity of care over 2 years compared with usual care?
2. Will there be differences between intervention and control groups with respect to other outcomes related to the youth/family's satisfaction with care, care coordination, self-care, health service utilization, cost-effectiveness, and quality of life?
3. What are the experiences of youth, parents, the transition team, and other clinicians involved in the intensive transition support process?

Eligibility

Inclusion Criteria:

• Patients 17 years 6 months- 17 years 9 months old (inclusive) who meet Ontario's CMC

  definition

  1. technology dependence and/or users of high-intensity care,
  2. fragility (severe and/or life-threatening condition,
  3. chronicity (expected to last at least 6 months),
  4. complexity (involvement of ≥5 healthcare practitioners/teams and healthcare services in ≥ 3 locations such as home, school, hospital, etc.).

Exclusion Criteria:

• are expected to die within 2 years of recruitment (e.g., those receiving active end-of-life care)
• do not have a stable primary caregiver (e.g., those who reside in residential or long-term care facilities, and those in foster care as the intervention is focused on a patient-caregiver dyad)