Health‐Related Quality of Life in Children with Primary Complex Motor Stereotypies

BACKGROUND: Primary complex motor stereotypies (pCMS) are repetitive movement disorders that frequently co-occur with psychiatric symptoms, but their impact on health-related quality of life (HRQoL) has never been systematically characterized. OBJECTIVES: This cross-sectional, exploratory study aimed to compare HRQoL in children with pCMS with published normative reference values, assess agreement between child- and parent-reported HRQoL, and examine associations between stereotypy severity and co-occurring psychological symptoms with HRQoL. METHODS: Children aged 5-17 years with pCMS were recruited from a pediatric neurology movement disorders clinic. HRQoL was measured using the Pediatric Quality of Life Inventory (PedsQL™) Child Self-Report and Parent Proxy-Report. Stereotypy severity was assessed with the Stereotypy Severity and Stereotypy Linear Analog Scales. Parent-reported ADHD, anxiety, and obsessive-compulsive symptoms were also collected. HRQoL scores were compared with published normative reference values, child-parent agreement was examined, and multivariable linear regression was used to identify correlates of self-reported HRQoL. RESULTS: Children with pCMS had lower Total and Psychosocial HRQoL scores than published normative values, whereas Physical Health scores did not differ significantly. Child- and parent-reported HRQoL were significantly correlated across domains, with good overall agreement. In exploratory regression models, greater ADHD and anxiety symptom burden were associated with lower Total and Psychosocial HRQoL scores, whereas stereotypy severity showed no association. CONCLUSIONS: Children with pCMS may experience reduced HRQoL, particularly in psychosocial rather than physical domains. Co-occurring ADHD and anxiety symptoms were more strongly associated with HRQoL than stereotypy severity, supporting comprehensive assessment of psychosocial functioning and psychiatric symptoms in this population.