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Open Access Highly Accessed Research

Living with muscular dystrophy: health related quality of life consequences for children and adults

Martha A Grootenhuis1*, Judith de Boone2 and Anneke J van der Kooi3

Author Affiliations

1 Pediatric Psychosocial department, Emma Children's Hospital AMC, Amsterdam, P.O. box 22700, 1100 DE, Amsterdam, The Netherlands

2 Rehabilitation Center "de Trappenberg", Huizen, The Netherlands

3 Department of Neurology, Academic Medical Center, University of Amsterdam, The Netherlands

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Health and Quality of Life Outcomes 2007, 5:31  doi:10.1186/1477-7525-5-31

Published: 6 June 2007

Abstract

Background

Muscular dystrophies are chronic diseases manifesting with progressive muscle weakness leading to decreasing activities and participation. To understand the impact on daily life, it is important to determine patients' quality of life.

Objective

To investigate Health Related Quality of Life (HRQoL) of children and adults with muscular dystrophy (MD), and to study the influence of type and severity of MD on HRQoL in adult patients.

Methods

Age-related HRQoL questionnaires were administered to 40 children (8–17 years), and 67 adult patients with muscular dystrophies.

Results

Significant differences in HRQoL were found in children and adults with MD compared to healthy controls. Patients with Becker muscular dystrophy reported a better HRQoL on the several scales compared to patients with other MDs. Severity was associated with worse fine motor functioning and social functioning in adult patients.

Conclusion

This is one of the first studies describing HRQoL of patients with MD using validated instruments in different age groups. The results indicate that having MD negatively influences the HRQoL on several domains.