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Photo: Ehimetalor Akhere Unuabone

Adole7C- congenital heart disease

Research project

Short description

The project is carried out in collaboration between university hospitals in Gothenburg, Linköping, Lund, Stockholm, Umeå, Uppsala and Örebro. The study is ongoing and several results have been published.

Work plan: 

Based on hospital-related factors in Sweden study:

  1. the proportion of patients with congenital heart defects who continued or discontinued their medical follow-up after transfer to adult healthcare, and at what level of care any follow-up takes place
  2. patient-related and hospital-related factors that predict patient non-adherence;
  3. implications for morbidity, mortality and care consumption;
  4. obstacles to continued medical follow-up based on the patients' perspective.


The study will provide data on how many patients with congenital heart disease that should be under medical surveillance but are not. Furthermore, factors related to healthcare will also be studied. This allows us to identify factors that may influence why people who should be followed-up but are not. Overall, the current study will reduce the current knowledge gap regarding the incomplete follow-up of young people with congenital heart disease in Sweden.

Researchers in the project 

Project manager: Philip Moons

Project coordinator: Ewa-Lena Bratt

Doctoral student: Sandra Skogby

Other partners:

Bengt Johansson Norrland University Hospital in Umeå and Umeå University; Eva Goossens University of Antwerp, Belgium; Christina Christersson Academic Hospital in Uppsala; Shalan Fadl University Hospital in Örebro; Jan Sunnegårdh Children's Heart Center Queen Silvia's Children's Hospital in Gothenburg; Edit Nagy Karolinska Hospital in Stockholm; Kalliopi Kazamia Academic Hospital in Uppsala; Annika Rydberg Norrland University Hospital in Umeå; Eva Fernlund Crown Princess Victoria's Children and Youth Hospital in Linköping; Katarina Hanseus Children's Heart Center Skåne University Hospital in Lund; Per Winberg Karolinska University Hospital in Stockholm.