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


CONCLUSIONS
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.
Grootenhuis
Martha A
MA
Pediatric Psychosocial department, Emma Children's Hospital AMC, Amsterdam, The Netherlands. m.a.grootenhuis@amc.uva.nl
de Boone
Judith
J
van der Kooi
Anneke J
AJ
D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D000367:Age Factors; D000368:Aged; D016022:Case-Control Studies; D002648:Child; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D008875:Middle Aged; D009136:Muscular Dystrophies / Q000503:physiopathology / Q000523:psychology* / Q000628:therapy; D009426:Netherlands; D011594:Psychometrics; D011788:Quality of Life / Q000523:psychology*; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires; D013557:Switzerland