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European Heart Journal Advance Access published online on December 7, 2004
European Heart Journal, doi:10.1093/eurheartj/ehi054
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European Heart Journal © The European Society of Cardiology 2004; all rights reserved

Clinical research

Individual quality of life in adults with congenital heart disease: a paradigm shift

Philip Moons 1*, Kristien Van Deyk 2, Kristel Marquet 3, Els Raes 3, Leentje De Bleser 3, Werner Budts 4, and Sabina De Geest 5

1 Center for Health Services and Nursing Research, Katholieke Universiteit Leuven, Kapucijnenvoer 35/4, B-3000 Leuven, Belgium; Division of Congenital Cardiology, University Hospitals of Leuven, Belgium
2 Center for Health Services and Nursing Research, Katholieke Universiteit, Leuven, Belgium; Division of Congenital Cardiology, University Hospitals of Leuven, Belgium
3 Center for Health Services and Nursing Research, Katholieke Universiteit, Leuven, Belgium
4 Division of Congenital Cardiology, University Hospitals of Leuven, Belgium
5 Center for Health Services and Nursing Research, Katholieke Universiteit, Leuven, Belgium; Institute of Nursing Science, University of Basel, Switzerland

* To whom correspondence should be addressed.
Philip Moons, E-mail: philip.moons{at}med.kuleuven.ac.be


  Abstract

Aims During the last decade, a paradigm shift has emerged in the measurement of quality of life, from the use of standard questionnaires towards a more individualized approach. Therefore, this study examined individual quality of life in adults with congenital heart disease and explored potential differences with those reported by matched, healthy control subjects.

Methods and results We examined 579 adults with congenital heart disease. A subsample of 514 of these patients was matched for age, gender, educational level, and employment status with 446 healthy counterparts. Individual quality of life was assessed using the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW). Twelve domains affecting patients' quality of life were identified. Family, job/education, friends, health, and leisure time were the most prominent quality of life domains. Significantly fewer patients than control subjects considered financial means and material well-being and future to be important determinants of quality of life.

Conclusion Assessment of quality of life in adults with congenital heart disease that focusses on the individual is appropriate for obtaining in-depth information on issues relevant for patients' quality of life. This represents a paradigm shift in the measurement of this concept.

Keywords: Quality of life; Heart defects; Congenital; Adults; SEIQoL.
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