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Open Access Quality of Life of Adult Men with Duchenne Muscular Dystrophy in the Netherlands: Implications for Care

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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 (r s 0.53, p < 0.001) and vitality (r s 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.

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Keywords: ADULT; DUCHENNE MUSCULAR DYSTROPHY; QUALITY OF LIFE

Document Type: Research Article

Publication date: February 1, 2015

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  • Journal of Rehabilitation Medicine is the international peer-reviewed journal published in English, with at least 10 issues published per year.

    Original articles, reviews, case reports, short communications, special reports and letters to the editor are published, as also are editorials and book reviews. The journal strives to provide its readers with a variety of topics including: functional assessment and intervention studies, clinical studies in various patient groups, methodology in physical and rehabilitation medicine, epidemiological studies on disabling conditions and reports on vocational and sociomedical aspects of rehabilitation.

    The journal is read by a wide group of healthcare professionals including specialists in rehabilitation medicine, neurology, clinical neurophysiology, general medicine, psychologists, physiotherapists, occupational therapists and social workers.

    Contributions from all parts of the world and from different professions in rehabilitation are welcome.

    ISI Impact Factor 2009: 1.882.

    Owned by Foundation of Rehabilitation Information.


    Since the Journal of Rehabilitation Medicine is an Open Access journal, the contents will no longer be provided via Ingenta Connect after December 31, 2020. To continue accessing the journal free of charge please go to https://www.medicaljournals.se/jrm.
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