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Enrolling by invitation NCT06583525

Evaluation of the TAC Program

No phase Interventional Youth with Multimorbidity or Rare Dieases

For patients and families

In plain language

An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.

What is being studied
The protocol lists: Intensive Transition Support.
Who it may be relevant to
Registry conditions: Youth with Multimorbidity or Rare Dieases. Basic parameters: 16 years — 18 years · All.
What needs checking
Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
Where it takes place
Canada
Next step
Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →

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Official title

Evaluation of the Transition to Adult Care (TAC) Program for High-Risk Youth with Multimorbidity or Rare Disease: a Prospective Observation Cohort Study

Overview

This is a mixed-methods evaluative study examining the effectiveness of the Transition to Adult Care Program at the Hospital for Sick Children (TAC) Program on high-risk youth with medical and psychosocial complexity transitioning to adult and/or primary care services. The overarching aim is to study the effectiveness of a new interdisciplinary and holistic Transition to Adult Care Program (TAC) on health-related outcomes for high-risk youth with multimorbidity or rare diseases and their caregivers by: 1. Assess the effect of the TAC program on the youth's transition readiness, self-efficacy, self-management, health-related quality of life, and satisfaction. 2. Assess the effect of the TAC program on the caregiver's satisfaction. 3. Explore the experiences, perceptions, needs, and priorities of youth and caregivers participating in the TAC program using qualitative research methods. 4. Describe the feasibility of the TAC program (defined as success in patient recruitment, attendance, participation, retention and transfer).

Interventions

  • Other Intensive Transition Support
    A multidisciplinary transition team (nurse practitioner and social worker) will coordinate the transition process for each patient across multiple settings, focused on the youth's highest priority needs while also supporting the caregivers. Participants will receive case management and care navigation using an intensive transition support model provided through the partnership of a transition team. The transition team will collaborate with the participants existing care team to help coordinate c

Primary outcome measures

  • Early Identification and Transition Readiness [Time frame: Baseline,12 months and 24 months]
  • Early Identification and Transition Readiness [Time frame: Baseline,12 months and 24 months]
  • Early Identification and Transition Readiness [Time frame: Baseline,12 months and 24 months]
  • Early Identification and Transition Readiness - Service Satisfaction [Time frame: Baseline,12 months and 24 months]
  • Information Sharing and Support [Time frame: 6 to 24 months]
  • Information Sharing and Support [Time frame: 6 to 24 months]
  • Transition Plan [Time frame: 6 to 24 months]
  • Coordinated Transition [Time frame: 6 to 24 months]
  • Introduction to Adult Services [Time frame: 24 to 36 months]
  • Transition Completion [Time frame: 24 to 36 months]
Secondary outcome measures (1)
  • Program Feasibility [Time frame: 24 to 36 months]

Eligibility criteria

Inclusion criteria

Aged 16-18 years old and have a complex medical history, as defined by:

  • Clinical Characteristics: Multi-morbidity (≥ 3 long-term chronic physical and/or mental health conditions (with primary condition being a physical health condition AND/OR Rare disease/ genetic condition.
  • High Risk: No clearly identified adult provider/services following transfer AND/OR experiencing significant barriers related to Social and Structural Determinants of Health.

Exclusion criteria

  • Moderate to severe developmental/intellectual disabilities
  • Followed by services at SickKids which has an established transition program/provider
  • Does not provide consent

Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.

Healthy volunteers: No

Study design

Allocation
N/A
Model
Single group
Masking
Open label
Primary purpose
Treatment

Study locations

Canada · 1 center
  • The Hospital for Sick Children (SickKids) — Toronto

Identifiers

NCT: NCT06583525 · 1000081574

Primary sources (government registries)

View this study on ClinicalTrials.gov ↗