Title: Evaluation of the Transition to Adult Care (TAC) Program for High-Risk Youth with Multimorbidity or Rare Diseases: A Prospective Observation Cohort Study
Funder: The SickKids Foundation
Role: Principal Investigator: Toulany A; Co-Investigators: Vandepoele E, Cohen E, Orkin J, Teicher J, Lippett R, Wentzel, Allemang B.
Study summary: A new interdisciplinary and holistic Transition to Adult Care (TAC) program has been developed at SickKids for high-risk youth with medical and psychosocial complexity. Youth enrolled will participate in a series of outpatient visits with interdisciplinary team members focused on goal setting, care planning, education, and skill development, over approximately 2-3 years. The transition program is modelled on best practice outlined by Ontario Health’s Quality Standards for Transitions from Youth to Adult Health Care Services, developed in 2022 by stakeholders across pediatric, adult, and primary care settings, as well as patient and caregiver partners. This study will evaluate the effectiveness of the TAC program on the youth’s transition readiness, self-efficacy, self-management, health-related quality of life, and satisfaction for both youth and caregiver.