Abstract
Introduction: People with hyperkinetic movement disorders, including dystonia, experience often painful, involuntary movements affecting functioning. Seating comfort is a key unmet need identified by families. This paper reports a protocol to assess the feasibility and preliminary evidence for the efficacy of dynamic seating to improve functional outcomes for young children with dystonic cerebral palsy (DCP). Design: A series of single-case experimental design N-of-1 trials, with replications across participants, with a random baseline interval, and one treatment period (n = 6). Methods: Inclusion criteria: DCP; 21.5 cm < popliteal fossa to posterior sacrum < 35 cm; Gross Motor Function Classification System level IV–V; mini-Manual Ability Classification System level IV–V; difficulties with seating. Intervention: Trial of the seat (8 weeks), with multiple baseline before, during and after intervention and 2 month follow up. The baseline duration will be randomised per child (2–7 weeks). Primary outcomes: Performance Quality Rating Scale; Canadian Occupational Performance Measure; seating tolerance. The statistician will create the randomization, with allocation concealment by registration of participants prior to sending the allocation arm to the principal investigator. Primary outcomes will be assessed from video by an assessor blind to allocation. Analysis: Participant outcome data will be plotted over time, with parametric and non-parametric analysis including estimated size effect for N-of-1 trials.
Highlights
People with hyperkinetic movement disorders, including dystonia, experience often painful, involuntary movements affecting functioning
Children with dystonia experience involuntary movements throughout their waking day, and this affects all areas of functioning defined in the International Classification of Function (ICF) [2]
The proposed study will be a proof of principle using single-case experimental design (SCED) to evaluate the feasibility and potential efficacy of using a dynamic seat in children with dystonic cerebral palsy to inform future clinical trials
Summary
Dystonia is a neurological syndrome that differs from spasticity and it is characterised by involuntary, patterned, sustained, or repetitive contractions of opposing muscles, resulting in abnormal twisting body movements and abnormal postures [1]. Dystonic movements are often triggered by attempts to move [3], limiting the ability of the child to participate at the very moment they wish to do so It is often painful and causes discomfort. Gimeno et al [4] reported and ranked functional concerns identified by families and young people with dystonic movement disorders: first was pain affecting function, and access to assistive technology; second, dressing, hygiene and handling tools (including feeding); and third, participation in outdoor activities. R82 x:Panda for example) have a sprung backrest, hinged about an axis close to the child’s hips, and are able to move backwards if leaned upon Others, such as the Netti or Interco Aktivline have more complex mechanisms that enable the user to extend their hips and knees. The present seat provides postural support for children with dystonic cerebral palsy and whole-body involuntary extensor movements. A 4-point pelvic belt, thigh straps, ankle harnesses and a chest harness prevent the occupant from falling out of the seat
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