Abstract

IntroductionMedical treatments have limited long-term effect in task-specific dystonia. Whilst evidence supports the use of rehabilitation, no randomised controlled trials have been undertaken. This small-scale study determined the feasibility of implementing and evaluating a mixed sensory–motor task-specific dystonia rehabilitative programme.MethodsParticipants with writer’s or musician’s dystonia were recruited from a movement disorder and hand therapy clinic. Feasibility measures were recruitment rate, retention, session attendance, adherence to exercises. Self-report measures at 0, 3 and 6 months included: Arm Dystonia Disability Scale (ADDS), Tubiana and Chamagne Scale (TCS), Brief Illness Perception Questionnaire (BIPQ), Health Status (EQ-5D 5L), Clinical Global Impression Scale (CGI). Task performance was video-recorded at baseline and 6 months. At 6 months, interviews explored participant experiences of the intervention.ResultsFifteen patients were recruited over 6 months (rate 2.5/month, musician’s dystonia = 8, writer’s dystonia = 7). Complete data sets were collected for twelve people(80%). The programme comprised a maximum six sessions plus daily home exercises. Nine completed the home programme at ≥75%. No adverse events were reported. Effect sizes at 3 and 6 months, respectively, were ADDS 3-month = 0.28, 6-month = 0.23; TCS 3-month = 0.13, 6-month = 0.53; BIPQ 3-month = 0.38, 6-month = 0.71; EQ-5D-5L 3-month = 0.34, 6-month = 0.59; video analysis at 6 months = 0.78. Eleven (92%) improved on the CGI. Interviews supported acceptability of the intervention.ConclusionsThis intervention was feasible to deliver with high retention, adherence and acceptability. Improvements occurred across measures. This informs the development of future randomised controlled trials.

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