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APPROACH-IS: Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart Disease-International Study

For a list of APPROACH-IS publications, please  click here.


The number of adult patients with congenital heart disease is steadily increasing. Nowadays, about 90% of all children born with a heart defect reach adulthood. As a result, the focus of improving health care for patients with congenital heart disease has shifted from survival to optimal living in its broadest sense. Many studies on perceived health, psychosocial outcomes and quality of life, so called patient-reported outcomes, have been published, but report inconsistent results with important regional differences. This urges us to question whether these findings are the result of methodological issues, or that they represent real differences between regions and if so, what are the underlying causes of these differences.

The APPROACH-IS was a cross-sectional, comparative study and aims to examine the differences in patient-reported outcomes (e.g. quality of life) of adults with congenital heart disease who are living in different areas of the world. In addition, the study aims to give insight in how these potential differences in patient-reported outcomes could be explained. The primary outcome variables are physical health status, psychosocial functioning, behavioral outcomes, and quality of life.

Data collection for this project commenced in April 2013 and was completed by March 2015. In total, more than 4,000 patients have been enrolled.

The steering committee includes Professor Philip Moons (Belgium), Adrienne Kovacs (USA) and Professor Koen Luyckx (Belgium). For further information and publications, visit the website. 

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