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a Department of
Pediatric Pneumology and Immunology, Children's Hospital,
Virchow-Clinic, Humboldt-University, 13353 Berlin, Germany, b Institute of Medical Statistics and
Epidemiology, Benjamin Franklin Medical Center, Free University,
Berlin, Germany, c Children's
Hospital, Berlin-Buch, Germany, d University
Children's Hospital, Dresden, Germany, e University Children's Hospital, Bonn, Germany
Correspondence to: Dr D Staab.
Received 24 October 1997; Returned to authors 12 December 1997; Revised version received 4 March 1998; Accepted for publication 8 May 1998
BACKGROUND
Cystic
fibrosis is the most common inherited disease with a fatal outcome in
industrialised nations. With the improvement in life expectancy,
supporting patients and their families in adapting to life with this
chronic progressive disease has become increasingly important. The aim
of the present study was to investigate the relationship between health
related quality of life (HRQOL) in this population, severity of
disease, and cognitive/behavioural factors such as subjective health
perception and ways of coping.
METHODSA sample of 89 adolescent and adult patients with cystic fibrosis and 125 parents of
younger patients with cystic fibrosis completed questionnaires on
health related quality of life and on ways of coping with the illness.
Parents were asked to fill out the questionnaires regarding their own
quality of life and coping. Multiple regression analyses were performed
to examine the relationship between different predictor variables and
quality of life.
RESULTSAfter
accounting for the impact of disease severity and hours of treatment
per day, the subjective health perception of patients significantly
explained variance in their quality of life. Ways of coping were also
significantly correlated with HRQOL. In parents the most important
factor in explaining variance of HRQOL seems to be the coping style,
whereas disease severity of the child and subjective health perception
did not show any influence.
CONCLUSIONSThe
findings support the important role of cognitive and behavioural
factors in specific subjective health perception and ways of coping in
the adaptation to this severe chronic disease, both in patients
themselves and in parents. The results call for a careful assessment of
issues of coping and professional support for families of patients with
cystic fibrosis in the early course of disease.
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 D J FRENCH Quality of life in cystic fibrosis Thorax, September 1, 1998; 53(9): 721 - 722. [Full Text]
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