REVIEW OF QUALITY OF LIFE MEASURES IN CONGENITAL HEART DISEASE
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.
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
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.
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.
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.