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(includes CMT) Activity limitations in patients with neuromuscular disorders: A

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Neuromuscul Disord. 2009 Jan 22. [Epub ahead of print]

Activity limitations in patients with neuromuscular disorders: A

responsiveness study of the ACTIVLIM questionnaire.

Vandervelde L, Van den Bergh PY, Goemans N, Thonnard JL.

Rehabilitation and Physical Medicine unit, Université catholique de

Louvain, Unité de Réadaptation et de Médecine Physique (READ 5375),

Tour Pasteur, 53, Av Mounier, 1200 Brussels, Belgium.

Recently, a self-reported scale of activity limitations, the ACTIVLIM

questionnaire, was developed and validated in patients with

neuromuscular disorders (NMD). The purpose of this study was to

investigate its sensitivity to change.

One hundred thirty-two patients with NMD (mean age, range: 31, 6-80)

were assessed twice, with 21+/-4 months in between, using the

ACTIVLIM questionnaire. Mean score change, effect size, standardized

response, mean paired t-test and an individual-level statistical

approach were calculated for groups of patients according to their

self-rated functional status evolution and for three main diagnostic

groups (Ambulant and wheelchair-bound Duchenne muscular dystrophy

patients, myotonic dystrophy patients, and patients with Charcot-

Marie-Tooth neuropathy).

The responsiveness indices showed that the change in activity

measures was higher in patients who reported deteriorated functional

status and in patients with Duchenne muscular dystrophy. The ACTIVLIM

questionnaire showed a good sensitivity to change and could be useful

in research settings to characterize the disease course of NMD.

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