Nonmotor Symptom Scales in Children With Movement Disorders: A Scoping Review

Nonmotor symptoms (NMSs) in pediatric movement disorders, such as tics, dystonia, and cerebral palsy (CP), are important to consider but can be often overlooked, despite their substantial impact on daily functioning and quality of life. Understanding which NMSs are evaluated in these patient groups, and by which tools, can support the shaping of future research, including the potential development of future dedicated NMS assesment instruments. The aim of this scoping review was to identify the scales and tools used in routine practice and/or in research to assess NMSs in children with movement disorders.

A comprehensive search of MEDLINE, Embase, and PsycINFO was conducted for studies published between 1990 and 2023. Eligible studies included those that evaluated NMSs using scales in children aged 0-18 years with tic disorders, dystonia, or CP.

A total of 382 studies were included. Most of the articles identified were cross-sectional, cohort, and case-control studies. Cognitive impairment, mental health, behavioral difficulties, and pain were most frequently assessed using standardized scales. However, self-esteem and communication-critical components of social functioning-were rarely evaluated. The assessment of sleep disturbance, fatigue, and gastrointestinal and urinary symptoms was also less frequently addressed. Notably, our methodological approach may have led to an overrepresentation of NMS assessment in CP, given the larger body of literature available for this condition.

Significant gaps exist in the evaluation of NMSs in pediatric movement disorders, particularly in areas such as pain, sleep, and gastrointestinal issues. While standardization of NMS assessment is needed, it is unclear whether disorder-specific tools are preferable to broader NMS-focused measures. Given the current lack of data, using general scales may be a pragmatic first step, with refinement into disorder-specific tools as our understanding of symptom patterns evolves. Cross-cultural validation is also essential to improve the applicability of NMS scales across diverse populations. Integrating NMS assessment into routine clinical practice and interdisciplinary care may facilitate early identification and better management of these symptoms.