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European Heart Journal Advance Access originally published online on December 7, 2004
European Heart Journal 2005 26(3):298-307; doi:10.1093/eurheartj/ehi054
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European Heart Journal vol. 26 no. 3 © The European Society of Cardiology 2004; all rights reserved.

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

Philip Moons1,2,*, Kristien Van Deyk1,2, Kristel Marquet1, Els Raes1, Leentje De Bleser1, Werner Budts2 and Sabina De Geest1,3

1Center for Health Services and Nursing Research, Katholieke Universiteit, Leuven, Belgium
2Division of Congenital Cardiology, University Hospitals of Leuven, Belgium
3Institute of Nursing Science, University of Basel, Switzerland

Received 27 March 2004; revised 6 October 2004; accepted 21 October 2004; online publish-ahead-of-print 7 December 2004.

* Corresponding author: Center for Health Services and Nursing Research, Katholieke Universiteit Leuven, Kapucijnenvoer 35/4, B-3000 Leuven, Belgium. Tel: +32 16 336984; fax: +32 16 336970. E-mail address: philip.moons{at}med.kuleuven.ac.be

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.

Key Words: Quality of life • Heart defects • Congenital • Adults • SEIQoL


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