The CHAPTER II Study - Congenital Heart Adolescents Participating in Transition Evaluation Research
Overview
- Phase
- Not Applicable
- Intervention
- Not specified
- Conditions
- Congenital Heart Disease
- Sponsor
- University of Alberta
- Enrollment
- 120
- Locations
- 2
- Primary Endpoint
- Excess time to first ACHD clinic appointment.
- Status
- Completed
- Last Updated
- 8 years ago
Overview
Brief Summary
Transition is the planned movement of teens with chronic conditions from child-centered to adult-oriented healthcare. National bodies have published detailed guidelines about the importance of helping teens move to adult healthcare. However, there is no research regarding how to best organize and deliver Congenital Heart Disease (CHD) transition programs. Data is urgently needed. Therefore, the aim of this program is to develop research evidence that will better prepare health care providers to improve how they can help adolescents with transition.
This project will determine whether a nurse-led transition intervention program is better at preparing teens with CHD to independently manage their medical care, compared to the care that is currently provided. The most important finding of this study will be whether or not these teens subsequently attend the adult cardiology clinic that specializes in CHD problems, and the timing of when they attend.
Hypothesis: A transition intervention in combination with usual care, improved time to first Adult Congenital Heart Disease (ACHD) clinic attendance compared to usual care alone.
Investigators
Andrew Mackie
Associate Professor
University of Alberta
Eligibility Criteria
Inclusion Criteria
- •16 and 17 year olds with moderate or complex CHD
Exclusion Criteria
- •Significant developmental delay
- •Previous heart transplantation
Outcomes
Primary Outcomes
Excess time to first ACHD clinic appointment.
Time Frame: 12 - 24 months post enrolment
Secondary Outcomes
- Change in adolescent knowledge of their condition.(6 - 18 months post enrolment)
- Change in adolescent's self-management and self-advocacy skills/(6 - 18 months post enrolment)