Evaluation of Transition With a Heart, a Transition Program for Adolescents With Congenital Heart Disease and Parents
Condition: Congenital Heart Disease in Adolescence; Transitional Care
MeSH terms: Heart Diseases; Heart Defects, Congenital
Study type: Interventional

Summary: 
      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.
    


Intervention name(s): Transition With a Heart (TWAH)
Intervention type(s): Other
Intervention description(s): TWAH is a transition program, especially developed for adolescents with CHD and their parents. TWAH is 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. Details can be found in De Hosson et al, 2020 (1).
Allocation: Non-Randomized
Intervention model: Single Group Assignment
Intervention model description: A prospective quasi-experimental study will be conducted using a pre (intervention group only) - post-test design.
In the pre-test only adolescents in the intervention group will be examined as baseline. During the post-test adolescents and parents of both the intervention group and control group will be examined in order to investigate differences between them and to better determine the influence of the intervention on the outcomes.
Masking: None (Open Label)
Primary purpose: Health Services Research
Keywords: Transitional care