Peer-reviewed article

Intervention outcomes of children with non-degenerative dystonia and associated hyperkinetic movement disorders: A scoping review.

Gimeno H, Scott H, Sanchez RM, Doohan A, Chugh D et al. · 21 Jun 2026

Abstract

Aim To identify the outcomes reported in published studies of intervention approaches used with non-degenerative childhood hyperkinetic movement disorders, including dystonia, dyskinesia, hypertonia, athetosis, chorea, cerebral palsy, involuntary movement, and kernicterus, and map them to the International Classification of Functioning, Disability and Health (ICF) framework. Method This was a scoping review that used the Arksey and O'Malley's framework. Medline, CINAHL plus, and EMBASE were searched from 2001 (when the ICF was approved for use by the World Health Assembly) to February 2025. Data were extracted and mapped to the ICF framework. Results A total of 294 studies included 159 surgical (e.g. deep brain stimulation, intrathecal baclofen pump), 81 pharmacological (e.g. levodopa, trihexyphenidyl, toxin injections), 51 non-pharmacological and non-surgical studies, and three studies reporting outcomes longitudinally. Neuromodulation, particularly deep brain stimulation, was reported in 122 studies. Over half of the non-pharmacological/non-surgical studies described the management of the underlying impairments. Outcomes were reported as measured objectively 650 times with 209 unique tools. The most evaluated ICF domain was body functions and structures (375 of 635, 59%), followed by activity (165 of 635, 26%), and participation (37 of 635, 5.8%). The least assessed domains were quality of life (28 of 635, 0.04%), goals (25 of 635, 0.04%), and environment (5 of 635, 0.007%). Interpretation The major focus of assessment of interventions for children with non-degenerative hyperkinetic movement disorders is on body structure and function. The voices of children remain unheard across all studies, with a lack of individualized measurement. Partnering with children to understand what meaningful outcomes mean to them will go a long way to address this gap.