Functional priorities in daily life for children and young people with dystonic movement disorders and their families

Purpose: This study aims to describe the most prevalent functional concerns of a group of young people with dystonia and their primary carers, and to explore the relationship between concerns, aetiology, severity of motor disability and manual ability.

Method: The Canadian Occupational Performance Measure (COPM) was completed with 57 children with dystonic movement disorders (65% males/35% females, mean 11.2 years (3.5 -18.1)): 25% had primary dystonia, 75% secondary dystonia. Gross motor and manual function were classified using the Gross Motor Function Classification System (GMFCS) and the Manual Ability Classification System (MACS). COPM concerns were analysed with respect to aetiology and severity of motor disability.

Results: Almost three quarters of the respondents were GMFCS/MACS IV-V. All respondents had at least one concern around self-care. Other concerns included access to assistive technology, pain, dressing activities, use of tools and social participation. The nature and presence of concerns did not statistically differ according to the severity of gross motor or manual function impairment, though qualitative differences were noted. No statistical difference was found in relation to aetiology.

Interpretation: Children and young people with dystonia have common functional concerns and priorities independent of the cause of dystonia, gross motor severity or manual function ability.