Management of Movement Disorders in Chronic Neurological Conditions and Palliative Care: A Retrospective Cohort Study

Movement disorders are prevalent in pediatric palliative care (PPC), complicating chronic neurological conditions. Comprehensive studies on their characteristics and management remain limited. This study characterizes movement disorders and their management strategies in children receiving PPC and describes associated clinical and outcome patterns in this setting.

We conducted a retrospective study of 137 consecutive patients with chronic neurological disorders at the Pediatric Palliative Care Unit, Sant Joan de Déu Hospital, Barcelona (January 2023-December 2024). Data encompassed demographics, diagnoses, Gross Motor Function Classification System (GMFCS), seizures, spasticity, movement disorders, treatments, and outcomes, with neuroimaging and complications reviewed. Descriptive and comparative analyses were conducted.

Of 137 patients (55.4% male, mean age 8.3 years), 46.7% had movement disorders, predominantly dystonia (59.4% of movement disorder patients) and generalized patterns (87.5%). GMFCS level V (81.7%) and total activity of daily living dependency (91.2%) were common. Baclofen was used in 35.0% (mean dose 1.5 mg/kg/day). Deceased patients (38.7% of 137) had significantly higher opioid use (50.9% vs. 11.9%, P < 0.001), more progressive disorders (49.0% vs. 22.5%, P < 0.001), and greater need for respiratory support (47.2% vs. 28.6%, P = 0.030) than survivors. Patients with movement disorders (n = 64) had a higher prevalence of mitochondrial disorders (14.1% vs. 4.1%, P = 0.035) and better gross motor function (14.3% GMFCS I-III vs. 1.4%, P = 0.006) compared to those without (n = 73).

Movement disorders are common in PPC, with progressive disorders linked to mortality and respiratory complications. The observed association with mitochondrial disorders may help guide targeted screening and multidisciplinary management strategies.