Barn med hjärta
Photo: Anna Kolosyuk

Stepstones: Congenital heart disease

Research project

Short description

A person-centered transition program for young people with heart defects has been developed and evaluated through a randomized controlled study regarding the young person's degree of empowerment, participation in care, how prepared they are for being transferred to adult healthcare and knowledge of their illness, etc. The hypothesis was that young people who undergo a person-centred transition program over a 2.5-year period (16-18.5 years) increase their empowerment and show higher participation and self-determination regarding their health than young people who receive usual care. This is evaluated at the age of 18.5, but a long-term follow-up is also planned at the age of 23-25.

The project is carried out in collaboration between university hospitals in Gothenburg, Linköping, Lund, Stockholm, Umeå, Uppsala and Örebro.

Work plan 

Young people with heart disease have been included at seven university hospitals (Gothenburg, Linköping, Lund, Stockholm, Uppsala, Umeå, Örebro). In Gothenburg and Stockholm, young people have been randomized to healthcare according to current routines or to a person-centred structured transfer program plus standard care. Other hospitals participate as control groups without risk of contamination of an ongoing intervention.

A process evaluation and a health economic evaluation have been carried out in parallel with the randomized study. Data collection is complete and analysis is ongoing. The results from the randomized study are planned to be published in 2022. Several publications have already been published.


The study will provide scientific support for whether transition programs are effective or not. If one achieves increased participation and self-efficacy. This can affect self-care skills and thus in the long term improve the conditions for young people with heart disease to live a good and longer life. The result also has implications for the distribution of healthcare resources.


Project manager: Philip Moons

Project coordinator: Ewa-Lena Bratt

Markus Saarijärvi, Mariela Acuna Mora

Other partners:

Within the research group: Carina Sparud-Lundin, Sandra Skogby, Hanna Gyllensten, Åsa Burström (Karolinska Institutet)

Outside the research group: Lars Wallin University of Dalarna, Annika Rydberg Norrland University Hospital, Katarina Hanseus Skåne University Hospital in Lund, Eva Fernlund, Princess Victoria's Children and Youth Hospital in Linköping, Shalan Fadl, University Hospital in Örebro, Poppi Kamazia Academic Hospital in Uppsala.