Evaluation of the Transition to Adult Care (TAC) Program for High-Risk Youth with Multimorbidity or Rare Disease: a Prospective Observation Cohort Study
Overview
- Phase
- Not Applicable
- Intervention
- Not specified
- Conditions
- Youth with Multimorbidity or Rare Dieases
- Sponsor
- The Hospital for Sick Children
- Enrollment
- 126
- Primary Endpoint
- Early Identification and Transition Readiness
- Status
- Enrolling By Invitation
- Last Updated
- last year
Overview
Brief Summary
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:
- Assess the effect of the TAC program on the youth's transition readiness, self-efficacy, self-management, health-related quality of life, and satisfaction.
- Assess the effect of the TAC program on the caregiver's satisfaction.
- Explore the experiences, perceptions, needs, and priorities of youth and caregivers participating in the TAC program using qualitative research methods.
- Describe the feasibility of the TAC program (defined as success in patient recruitment, attendance, participation, retention and transfer).
Investigators
Alene Toulany
Principal investigator
The Hospital for Sick Children
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
Outcomes
Primary Outcomes
Early Identification and Transition Readiness
Time Frame: Baseline,12 months and 24 months
The change in the patients knowledge and confidence in their ability to manage their health and demonstrate transition readiness will be assessed using the Patient Activation Measure (10-item survey). An average net 6-point score increase demonstrating improvement
Early Identification and Transition Readiness - Service Satisfaction
Time Frame: Baseline,12 months and 24 months
The change in the patients and caregivers satisfaction with transitional health care services will be measured using the Larsen Client Satisfaction Questionnaire (8-item survey).
Information Sharing and Support
Time Frame: 6 to 24 months
The transition intervention will include offering support from the time of discharge from pediatric services until the first appointment with adult services. The number of patients who receive this intervention will be assessed via report in the patients medical record.
Transition Plan
Time Frame: 6 to 24 months
The transition intervention will include the co-creating an individualized transition plan to identify the patients transition goals and set timelines. The number of patients who receive this intervention will be assessed via report in the patients medical record.
Coordinated Transition
Time Frame: 6 to 24 months
The transition intervention will include developing a patient-specific transfer package. The number of patients who receive this intervention will be assessed via report in the patients medical record.
Introduction to Adult Services
Time Frame: 24 to 36 months
A joint clinic visit will be facilitated by the transition team with the identified receiving adult care provider. The number of patients who have received a warm handover visit with the transition team, primary care provider/service team, will be assessed via report in the patients medical record.
Transition Completion
Time Frame: 24 to 36 months
Successful transfer will be measured by the attendance of the first appointment with a primary care and/or subspecialty adult care provider between the first 6 to 12 months of transfer from the pediatric provider.
Health-Related Quality of Life
Time Frame: Baseline, 12 months and 24 months
The change in the patients quality of life will be measured using the The Pediatric Quality of Life Inventory 4.0 Generic Core Scale Teen Report The 23-item survey will assess four core health dimensions (physical functioning, emotional functioning, social functioning and school functioning) transformed into total scores ranging from 0 to 100. An increase in 12 and 24 months follow-up scores from baseline will be measured.
Experience in the process
Time Frame: 24 to 36 months
Semi-structured qualitative interviews will be conducted with a subset of participants to explore participants; experiences working with the transition team, and satisfaction with the tools and resources used.
Secondary Outcomes
- Program Feasibility(24 to 36 months)