title: Individual quality of life in adults with congenital heart disease: a paradigm shift.
abstract: OBJECTIVE
  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.
  
  
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Center for Health Services and Nursing Research, Katholieke Universiteit, Leuven, Belgium. philip.moons@med.kuleuven.ac.be
authors.forename: Philip
authors.initials: P
authors.lastname: Moons
authors.forename: Kristien
authors.initials: K
authors.lastname: Van Deyk
authors.forename: Kristel
authors.initials: K
authors.lastname: Marquet
authors.forename: Els
authors.initials: E
authors.lastname: Raes
authors.forename: Leentje
authors.initials: L
authors.lastname: De Bleser
authors.forename: Werner
authors.initials: W
authors.lastname: Budts
authors.forename: Sabina
authors.initials: S
authors.lastname: De Geest
mesh_terms: D000293:Adolescent; D000328:Adult; D017677:Age Distribution; D000368:Aged; D004522:Educational Status; D004651:Employment; D005260:Female; D006330:Heart Defects, Congenital / Q000523:psychology*; D006801:Humans; D007398:Interpersonal Relations; D008297:Male; D008875:Middle Aged; D011788:Quality of Life