Participation and Functional Independence in Adults With Recessive Spastic Ataxia of Charlevoix-Saguenay.
Samar Muslemani, Isabelle Lessard, Caroline Lavoie and 4 others
PMID 35469466WHAT IT FOUND
Adults with ARSACS had disrupted daily and social activities, especially housing, mobility, community life and leisure.
Mobility level tracked worse independence, and motor performance related to daily activity participation.
Key findings
01Housing, mobility, community life and leisure were the most affected participation domains.
02Independence in daily activities differed by mobility level, especially for wheelchair users, and bladder, mobility and stairs were hardest.
03Motor performance was associated with participation, and daily activities showed stronger relationships than social activities.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTs
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What it does not show
The study included only 28 adults, and each mobility subgroup was small, so results may be incomplete. All participants were from a semi-rural area in Quebec, so access to services and transport may differ elsewhere. All participants had the same common ARSACS mutation, and other mutations may cause less severe disease. The study measured participation and independence at one time point, so it cannot show that motor impairment causes participation restrictions or that treatment changes them. The Barthel Index had ceiling effects in this chronic condition, so it may not fully capture independence.
Declared interests
The authors disclosed receipt of financial support from Muscular Dystrophy Canada, Fondation de l’Ataxie Charlevoix-Saguenay, Canadian Institutes of Health Research grant number TR2-119189 and Fonds de Recherche du Québec - Santé.
The easy way to misread this
Do not read the associations between motor performance and participation as proof that therapy improves participation. This was a cross-sectional study of 28 adults with ARSACS, and it did not test an intervention.