Article

Purpose To investigate the upper extremity (UE) at the level of impairments and
related activity limitations and participation restrictions in people with
facioscapulohumeral muscular dystrophy (FSHD).
The study was conducted
using web-based questionnaires that were distributed amongst people with FSHD in
the Netherlands. Eighty-eight respondents started the survey, and 71 completed
it. The questionnaires covered the following dimensions: Function, Activity and
Participation of the International Classification of Functioning Disability and
Health. Results More than 40% of the respondents experienced pain in one arm or
both the arms. Increased pain and stiffness scores and longer disease duration
were associated with increased limitation scores. For basic activities, lifting
the arm above shoulder-level was most frequently reported as most limited,
coherent with the clinical picture of FSHD. Among the respondents, 50% indicated
restrictions at school, 78% indicated restrictions at work and more than 80%
indicated restrictions whilst participating in sports, hobbies, household
activities and romantic relationships. Conclusions :
This study has shown that
alongside the well-known problem of lifting the arms above shoulder-level, UE
activities below shoulder height during vocational and occupational activities
are also problematic in patients with FSHD. Alongside disease duration, pain and
stiffness are associated with UE activity limitations. Implications for
Rehabilitation Attention is needed for pain and experienced stiffness in the
upper extremity as it is frequently present in patients with FSHD. Rehabilitation
professionals need to be aware that patients with FSHD not only experience
problems with activities above shoulder height, but also with activities below
shoulder height. At least 50% of the patients with FSHD experience restrictions
in participation as a result of limitations in their UE.

Langue : ANGLAIS