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A REVIEW OF QUALITY OF LIFE MEASURES IN CONGENITAL HEART DISEASE

Kamphius M, Verloove-Vanhorick P, Vliegen HW, Ottenkamp J
Department of Pediatric Cardiology and Cardiology, Leiden University Medical Centre, and TNO Prevention and Health. Leiden, The Netherlands.

Objective: The objective of the present study was to identify publications that have measured health-related quality of life (HRQoL) in patients with congenital heart disease according to the definition, and to summarise the outcome concerning health as judged by the patients themselves.

Measurements: The following definition for HRQoL was used: it concerns the way patients judge about their functioning in different dimensions (physical, psychological and social). It is therefore self-administered. However, various authors have suggested a second level of subjectivity to the concept of HRQoL: the value that the patients assign to their perception of their functioning. An extensive Medline-search was performed. All English -and German- lauguage articles that had suggested HRQoL or that had focussed on the patients' own perception of their health were included for detailed study.

Results: In total, 76 publications were studied in detail. Of these, 53 publications had suggested HRQoL as an outcome in title or in the abstract, but 27 (51%) showed no explanation of HRQoL at all. Different explanations for quality of life were mentioned: e.g. medical outcome, NYHA-class, or complaints. Of those studies that had focussed on the patients' own perception, only 5 conceptually had defined HRQoL. This was done according to our definition in only 2, perhaps 3 studies. Then, 4 publications used an instrument that met the first requirements as mentioned above, but only 2, perhaps 3 have described the second level of subjectivity.
In total, 20 studies had focussed on the patients' own perception of their general health or functioning: generally it can be concluded that most patients feel they are healthy.

Conclusions: We can conclude that HRQoL in research with congenital heart disease patients is seldom defined clearly and measurements aim at different targets. Therefore, studies suggesting HRQoL as an outcome measure should be viewed cautiously.

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