Evaluation of Transition With a Heart, a Transition Program for Adolescents With Congenital Heart Disease and Parents

Ghent University Hospital (UZ)

Status: Completed

Conditions: Congenital Heart Disease in Adolescence; Transitional Care

Treatments: Other: Transition With a Heart (TWAH)

Study type: Interventional

Funder types: Other

Identifiers

NCT05479630

2015-1037

Details and patient eligibility

About

The department of Congenital Heart Disease of the Ghent University Hospital (Belgium) developed a transition program dedicated to adolescents with congenital heart disease (CHD): 'Transition With a Heart´ (TWAH). TWAH was developed based on the Dutch program 'On your own feet´, starting at the age of 12 years and continuing after transfer. The most vital core components include a general and individualized flowchart, adolescent-centred communication, a joined transfer consultation and an appointed transition coordinator. TWAH focuses on promoting disease knowledge, autonomy and skills development of adolescents with CHD. Interventions encompass the use of a communication-paper, autonomously talking to professionals, individualized education and skills development plan. Interventions were selected from the highest sources of scientific evidence currently available including (quasi-) experimental studies, narrative literature reviews and expert opinions.

TWAH is the intervention in the conducted study. Hence, the intervention group are adolescents with CHD and their parents who are participating in TWAH. Adolescents and their parents who are transferred according to standard care (joined transfer consultation only) are identified as the control group and will be examined in the post test phase in order to be able to make comparisons with the intervention group. At baseline (the start of TWAH) participants of the control group already made the transfer to the adult ward.

The investigators consider the following hypothetical scenario:

• TWAH will have a positive influence on disease knowledge and transition experiences of the participants.

Enrollment: 81 patients

Sex: All

Ages: 12 to 25 years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• Clinical diagnosis of a CHD of great or moderate complexity (6)
• From the age of 12 years or older
• Must be able to complete the questionnaires
• Dutch speaking AND/OR
• Parents having children who are meeting the inclusion criteria above

Exclusion criteria

Trial design

Primary purpose: Health Services Research

Allocation: Non-Randomized

Interventional model: Single Group Assignment

Masking: None (Open label)

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81 participants in 2 patient groups

Adolescents and their parent of the intervention group

Experimental group

Description:

Adolescents and their parent who are participating in TWAH

Treatment:

Other: Transition With a Heart (TWAH)

Adolescents and their parent of the control group

No Intervention group

Description:

Adolescents and their parent who are not participating in TWAH