Clinical characteristics, functional impact and caregivers' priorities in Malaysian children with dystonic cerebral palsy.

BackgroundDystonic cerebral palsy is a severely disabling condition that poses significant management challenges, compounded by multiple associated comorbidities and the limited availability of effective treatment options.ObjectiveThis study aimed to study the clinical characteristics, functional impact and caregivers' priorities among children with dystonic cerebral palsy.MethodsThis was a cross-sectional observational study (n = 50) among children with dystonic cerebral palsy aged four to 18 years. The Hypertonia Assessment Tool and Barry-Albright Dystonia Scale were used to identify and measure the severity of dystonia. The Dyskinetic Cerebral Palsy Functional Impact Scale was used to assess the daily impact of dystonia and caregivers' priorities.ResultsFifty children (70% male, mean age 8.6 years old) with majority functional status from level III to V across all functional classification systems were included. Significant correlation was observed between functional impact with dystonia severity scores (p = 0.003). The caregivers' priorities were beyond gross motor and mobility concerns.ConclusionsUnderstanding the clinical characteristics, comorbidities, functional profiles and caregivers' priorities is imperative in tailoring interventions to those most relevant and important for children with dystonic cerebral palsy and their families.