Article

OBJECTIVE: To assess quality of life of adults with Duchenne muscular dystrophy
in the Netherlands and to identify domains and major problems influencing quality
of life. DESIGN: Cross-sectional. SUBJECTS: Seventy-nine men aged >/= 20 years
with Duchenne muscular dystrophy. METHODS: The Medical Outcome Study Short
Form-36 (SF-36), World Health Organization Quality of Life -
BREF (WHOQOL-BREF)
and an interview were used to assess quality of life and problems. RESULTS: Compared with Dutch general population reference values, the SF-36 domains scores
were lower on all domains except mental health and role limitations due to
emotional problems. On the WHOQOL-BREF the social relationships domain score was
lower. Main problems were intimate relationships, work, leisure, transport and
meaningfulness of life. Seventy-three percent stated overall quality of life as
"(very) good". The SF-36 domains mental health (rs 0.53, p < 0.001) and vitality
(rs 0.49, p < 0.001) had the strongest associations with overall quality of life.
CONCLUSION: Adult men with Duchenne muscular dystrophy assess their health status
as low in the physical, but not in the mental, domains. Experienced problems are
mainly in the area of participation. They are generally satisfied with their overall quality of life.

Langue : ANGLAIS