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Photo: Ehimetalor Akhere Unuabone

Adole7C- congenital heart disease

Research project

Short description

The overall aim is to map and study patient and hospital-related causes that lead to interruptions in the medical follow-up of young people with congenital heart disease as well as to investigate the consequences of such interruption, including medical expenses.


Although life-long medical follow-up is required in complex chronic diseases of childhood onset, research showed that a substantial proportion of patients present with gaps in continuous care or got lost to follow-up. The phase of transition to adulthood is a particularly vulnerable period with a high prevalence of discontinuity of care. The consequences of care gaps may be far-reaching. Research in diverse adolescent patient populations showed that care gaps are associated with increased morbidity, long-term complications, number of hospitalizations, need for urgent interventions or re-interventions, and higher rates of health-risk behaviours. Hence, identifying risk factors and developing measures to prevent care gaps are utmost important. This is even more important since health in adolescence is a critical prerequisite for adult attainment and life.


The main purpose of the Adole7C-congenital heart disease project is to improve continuing care for adolescents with chronic conditions by unravelling hospital-related factors for care gaps and to investigate its consequences among young people with congenital heart disease, serving as a model cohort for chronic childhood disease.

Specific objectives

  1. To determine the proportion of patients with congenital heart defects who discontinued their medical follow-up after transfer to adult healthcare.
  2. To investigate patient-related and hospital-related factors predicting discontinued follow-up care.
  3. To describe barriers to continued medical follow-up from the perspective of young patients.

Significance and novelty of the project

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 lack of followed-up. Overall, the current study will reduce the current knowledge gap regarding the discontinued follow-up among young people with chronic conditions in Sweden, using congenital heart disease as a modle cohort.

The novelty of the Adole7C project lies in: (i) providing first time evidence on hospital-related factors that impact on care gaps, above and beyond patient-related factors; (ii) applying a multilevel approach in the identification of predictors of care gaps, which later on can be expanded to other conditions in Sweden.

Researchers in the project

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

Project manager: Philip Moons

Project coordinator: Ewa-Lena Bratt  and  Sandra Skogby

Other partners outside of the research group:

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.


The study is finalized, and results have been published or will be published soon.