Nonmotor symptoms of craniocervical dystonia: a multicentre international study-using the Dystonia nonmotor symptoms questionnaire.

Non-motor symptoms (NMS) are increasingly recognized as significant contributors to the overall burden of craniocervical dystonia (CCD), yet they remain underdiagnosed. This international, multi-centre observational study aimed to evaluate the prevalence and burden of NMS in 167 patients with adult-onset idiopathic CCD across Poland, the UK, and Germany, using the validated Dystonia Non-Motor Symptoms Questionnaire (DNMSQUEST). Participants were assessed at the end of their botulinum neurotoxin treatment cycle. The majority of patients (94.6%) reported at least one NMS, and over half experienced five or more, with pain (62.3%) and sleep dysfunction (68.8%) being the most common. Emotional disturbances, including anxiety (34.7%) and depression (35.9%), were also prevalent. The total DNMSQUEST score averaged 5.9 ± 3.8. NMS burden was categorized as low in 42.5%, medium in 35.3%, and high in 22.2% of patients. Combined cervical and cranial dystonia was associated with the highest NMS burden (mean DNMSQUEST score 9.28 ± 3.09). NMS were significantly more prevalent in CCD compared to a small healthy control group. Sleep dysfunction and pain were strongly correlated with higher total NMS scores. Impairments in activities of daily living (69.5%) and a substantial proportion of patients (49.7%) reported balance and gait difficulties. Comparisons with prior DNMSQUESTQ validation cohorts revealed similar symptom patterns, supporting the cross-cultural applicability of the questionnaire. This study highlights the significant and multifaceted burden of NMS in CCD and underscores the importance of incorporating structured NMS assessment into routine clinical care. Particular attention should be paid to sleep dysfunction and pain, which appear to be central to the NMS burden in CCD.