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Research project

Quality of Life in adults with congenital heart disease

Status: Ongoing longitudinal project. Start date of study 4: 01-01-2020 End date: 12-01-2022.

Long-term cardiological and psychosocial outcome in adults operated for congenital heart disease in early childhood: a longitudinal cohort-study of 40-53 years of follow-up.

What we do

About our project

Aim of this project: 

This study will focus on the long-term outcome after surgical correction of several congenital heart defects (CHD) in a non-selected cohort. The repetitive nature of this study will make it possible to analyze specific changes in cardiac function over time. Furthermore, the impact of a CHD on several psychological variables and quality of life will be investigated 

The main goal will be to obtain information about mortality,morbidity, cardiac function and about quality of life and  psychological functioning in a cohort of patients, who underwent surgical correction of CHD, specifically ASD, VSD, tetralogy of Fallot, transposition of the great arteries and pulmonary stenosis. 

Execution of the project:

This will be a single center, longitudinal cohort study. Included are patients, both men and women who were operated in the ErasmusMC between 1968 and 1980 because of and atrial septal defect, ventricular septal defect, transposition of the great arteries, tetralogy of Fallot or pulmonary stenosis. All patients will undergo a one day protocol, including echocardiography, holter, cardiac MRI or CT, biomarker analysis and exercise testing (VO2max). Furthermore, an extensive psychological examination will be conducted.

Our research focus

Primary study parameters/outcome of the study:

Cardiac outcomes:
1. To describe the life expectancy in patients who underwent 
corrective surgery below the age of 15 years because of a congenital heart defect after 40 to 53 years. 

Psychological outcomes: 

1. To describe the quality of life and psychological functioning in this cohort and to compare it with a healthy control population.

Funds & Grants

Grant of the ErasmusMC Thorax Foundation


  • Cardiothoracic surgery 


1.         Menting M, Cuypers JAAE, Opić P, Utens E, Witsenburg M,van den Bosch A, Van Domburg R, Meijboom F, Boersma E, Bogers AJJC, and Roos JW. The unnatural history of the ventricular septal defect: outcome up to 40 years after surgical closure. J Am Coll Cardiol 2015;65;18: 1941-1951

2.         Opic P, Roos-Hesselink JW, Cuypers JAA, Witsenburg M. van den Bosch A, van Domburg RT, Bogers AJJC, Utens EMWJ. Psychosocial functioning of adults with congenital heart disease: outcomes of a 30-43 year longitudinal follow-up. Clin Res in Cardiology 2015;104: 388-400

3.         Opic P, Utens EMWJ, Cuypers JAAE, Witsenburg M, van den Bosch A, van Domburg R, Bogers AJJC, Boersma E, Pelliccia A, Roos-Hesselink JW. Sports participation in adults with congenital heart disease. Int J Cardiol 2015; 187: 175-182

4.         Cuypers JAAE, Menting ME, Konings EM, Opic P, Utens EMWJ, Helbing WA, Witsenburg M, van den Bosch AE Ouhlous M, van Domburg RT, Rizopoulos D, Meijboom FJ, Boersma E, Bogers AJJC,  J.W. Roos-Hesselink et al. The unnatural history of Tetralogy of Fallot: Prospective follow-up of 40 years after surgical correction. Circulation 2014; 130: 1944-1953

5.         Cuypers JAAE, Menting ME, Opic P, Utens EMWJ, Helbing WA, Witsenburg M, van den Bosch AE, van Domburg RT, Baart SJ, Boersman E, Meijboom FJ, Bogers AJJC, Roos-Hesselink JW. The unnatural history of pulmonary stenosis up to 40 years after surgical repair. Heart 2017; 103:4: 273-279

Our team

  • Martijn Kauling
  • Jolien Roos-Hesselink
  • Judith Cuypers
  • Annemien vd Bosch


Contact us here or here