Congenital Heart Disease
Conditions
Keywords
Transition from pediatric to adult clinical care
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.
Interventions
BEHAVIORALEducational
The first interaction will happen at study enrolment and will be educational in nature. Following the session, the nurse will follow up with the participant to discuss any questions.
BEHAVIORALSelf management
The second interaction will take place 2 months after enrollment and will focus on self management and communication skills. Following the session, the nurse will follow up with the participant to discuss any questions.
Sponsors
Heart and Stroke Foundation of Canada
University of Alberta
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
TREATMENT
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
16 Years to 17 Years
Healthy volunteers
No
Inclusion criteria
* 16 and 17 year olds with moderate or complex CHD
Exclusion criteria
* Significant developmental delay * Previous heart transplantation
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Excess time to first ACHD clinic appointment. | 12 - 24 months post enrolment |
Secondary
| Measure | Time frame |
|---|---|
| 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 |
Countries
Canada
Outcome results
None listed