Stepstones: Congenital heart disease
Short description
A person-centred transfer programme for young people with congenital heart disease has been developed and evaluated through a randomised controlled trial. The study focused on empowerment, involvement in their care, preparation for the transition to adult healthcare, and knowledge of their condition. The hypothesis was that those who participated in the programme from ages 16 to 18.5 would exhibit a higher level of empowerment and self-determination than those receiving conventional care. At the age of 18.5, the results showed that participants in the programme felt more prepared for adult healthcare, had increased knowledge about their condition, and a more positive self-image compared to the control group. Currently, a long-term follow-up is underway to evaluate the programme's long-term effects five years after the transition
Work plan
Young people with congenital heart diseae were included at seven university hospitals (Gothenburg, Linköping, Lund, Stockholm, Uppsala, Umeå, Örebro). In Gothenburg and Stockholm, young people were randomised to care according to prevailing routines or to a person-centred structured transfer programme plus usual care. The other hospitals participated as control groups without the risk of contamination from an ongoing intervention.
A process evaluation and a health economic evaluation have been conducted alongside the randomised study. The results from the randomised study have been published (Bratt et al 2023) along with several publications from the process evaluation (Saarijärvi et al 2019; 2021; 2022).
Long-term effects of transfer programmes are still unexplored. Transfer programmes aim not only for positive short-term outcomes but also to improve results over the longer term. Besides structured transfer programmes, there are other potentially crucial factors for optimising the health and wellbeing of young adults with congenital heartd disease. One known risk is socioeconomic aspects that can affect access to the right care and support resources. Health inequalities can arise due to differences in socioeconomic factors (e.g., education, income, country of birth etc). By studying how socioeconomic factors affect the health of the group of young adults with heart defects, these central factors can also be addressed to promote a person-centred transition to adult life, optimising health and a good life.
The long-term follow-up aims to evaluate clinical and patient-reported outcomes five years after the transfer to adult healthcare in young people with congenital heart defects.
Significance
The study has provided scientific support that the transition programme is effective in the short term. The study continues with a long-term follow-up five years after the transition to adult healthcare to monitor clinical and patient-reported outcomes over the longer term. The results will be significant for the allocation of healthcare resources.
Collaborators in the Project
Principal Invsetigator: Ewa-Lena Bratt
Project Coordinator for Long-Term Follow-Up: Mariela Acuna Mora
Researchers from the research group: Markus Saarijärvi, Carina Sparud Lundin, Sandra Skogby, Hanna Gyllensten, Åsa Burström (Karolinska Institute), Anna-Lena Brorsson (Karolinska Hospital), Philip Moons.
