Non-motor Symptom Scales in Pediatric Movement Disorders: A Call for Diagnostic-Specific Tools

Abstract

The importance of considering non-motor symptoms (NMS) in the assessment of patients with movement disorders is widely recognized. In adults, symptoms such as pain, sleep disturbances, anxiety, fatigue, and cognitive dysfunction can be systematically evaluated, sometimes with validated, condition-specific scales. For example, the Pain in Dystonia Scale (PIDS) has been recently developed for pain assessment across the spectrum of adult-onset isolated dystonia. In children, however, the evaluation of NMS remains inconsistent, fragmented, and poorly standardized. Yet, NMS are often disabling and have substantial consequences for the quality of life of children with movement disorders and their families. In a recent scoping review, we provide a timely overview of NMS scales used in children with movement disorders, focusing on the three most prevalent conditions, namely dystonia, tics, and cerebral palsy (CP). We identified a large and heterogeneous set of instruments across 382 studies. They were mostly borrowed from neurological conditions typically presenting in adulthood and other pediatric psychiatric conditions, leaving one to wonder whether they have similar accuracy and clinical relevance also in pediatric movement disorders. Here, we advocate for the development of condition-specific, developmentally appropriate, and clinically meaningful tools, and outline key priorities for achieving this goal.