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WHAT IS MOST IMPORTANT FOR YOUR QUALITY OF LIFE?: A PILOT STUDY ON INDIVIDUAL QUALITY OF LIFE OF ADULTS WITH CONGENITAL HEART DISEASE.

Moons P., Raes E., Deyk K., De Geest S., Geweling M., Budts W.
Centre for Health Services and Nursing Research, Katholieke Universiteit Leuven, Belgium; Division of Congenital Cardiology, University Hospitals of Leuven, Belgium; Institute of Nursing Science, University of Basel, Switzerland

Although life expectancy of patients with congenital heart disease increased substantially, many patients experience the heart defect intruding on their daily life. The importance of quality of life research in this patient population, therefore, emerged. Evaluation of quality of life is highly subjective, necessitating an approach assessing the most relevant areas for quality of life for each individual patient, in contrast to predetermined questionnaires. The aim of this pilot study was to examine quality of life and its individual determinants in adults with congenital heart disease.

Methods: In a 3-month period, 134 consecutive patients with congenital heart disease (67.2% males), with a median age of 24 (Q1=20; Q3=28.25) years, were included in this cross-sectional study. The most prevalent diagnoses were tetralogy of Fallot (21.6%), ventricular septal defect (16.4%), aorta stenosis (14.9%) and coarctation of the aorta (12.7%). Quality of life was measured using a Visual Analogue Scale (VAS) ranging from 0 to 100. To examine determinants of individual patient's quality of life, the SEIQoL-DW was used. This instrurment comprises 3 successive steps:
1) nomination by the respondent of the 5 areas most important for his/her quality of life,
2) rating of the actual status or fulfilment for each specified area on a VAS from 'worst possible' [O] to 'best possible' [100], and
3) quantification of the relative importance of each nominated area in comparison with each other, using a 5-segment disk.

Results: Patients perceive their overall quality of life as good (VAS median 80; Q1=73 -Q3=86). The SEIQoL-DW identified 13 areas affecting patients' quality of life. The table describes the percentage of patients reporting the respective areas (step 1), the median actual status or fulfilment (step 2), and the relative importance for each cue (step 3).

Domains important for the quality of life
Step 1
Step 2
Step 3
Significant others
73.9%
85.5
23%
Job/education
51.5%
68
18%
Leisure
50%
74
17%
Health
49.3%
76
23%
Social network
49.3%
75
20%
Personal values with respect to others, life and society
47%
79
20%
Financial means and material well-being
29.9%
67
16%
Psychological well-being
14.2%
76
19%
Capacities and impediments due to the heart defect
11.9%
49
17%
Future
10.4%
80
20%
Health care
3%
87.5
16.5%
Nourishment
3%
76
12%
Pets
2.2%
91
27%

Conclusion: Individual quality of life assessment in adults with congenital heart disease provides a detailed picture of issues relevant for patients' quality of life. Although some aspects are indicated by only few patients, e.g. pets, the fulfilment of these aspects and the relative importance may be very high for them, supporting the added value of individual quality of life assessments. These issues should be addressed in comprehensive health care programmes aiming at improving patients' quality of life.

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