Objective: To validate a non motor symptom (NMS) questionnaire in patients with craniocervical dystonia (CCD).

Background: We have reported the clinical use of a Dystonia Non-Motor Symptom self-completed Questionnaire (DNMS Quest) [1,2], which scores from 0 to 14. In this study, we present the data collected in an ongoing multicenter, multilingual validation of the DNMS Quest in consecutive patients with CCD attending botulinum toxin clinics at different regional centers in Germany and the UK.

Methods: In this prospective, one point in time, multicenter study we applied the DNMS Quest with comparator motor scales (TWSTRS, UDRS), established non-motor/quality of life questionnaires (CDQ-24, EQ.5D, MOCA), and the clinical global impression of severity (CGIS) in CCD patients as well as in age and gender matched healthy controls.

Results: A total of 35 patients with cervical dystonia (25 women); 59.6±14.6 years old (mean ± standard deviation); 16.5±12.3 years of disease duration, were assessed. Severity of motor dystonia assessed with TWSTRS was 33.6±12.5 and with UDRS 10.2±3.3. CGIS had a median score of 4.0 corresponding to patients being “moderately ill” (interquartile range 4.0 to 5.3). Mean DNMS Quest score was 6.5±3.5 (range 4 to 9). Most prevalent dominant NMS, as declared in DNMS Quest, were pain (74%), sleep disturbances (49-63%), loss of confidence (stigma) (57%), fatigue (49%) and mood problems (31%). Data of patients with cranial dystonia as well as data of healthy controls are yet to be collected.

Conclusions: NMS are evident in patients with CCD and are often under-recognised. A simple to use self-completed screening tool like the DNMS Quest is needed to raise higher awareness for NMS in the context of routine clinical consultations in patients with focal dystonia. Pain, sleep dysfunction, stigma, fatigue and mood problems appear to be dominant issues prompting the need of specific treatment which would be missed otherwise.

Reference: [1] Naidu Y., Martinez-Martin P., Rizos A., Jost W., Metta V., Warner T., Hulse N., Ashkan K., Ray Chaudhuri, The development of a non motor scale for craniocervical dystonia. Mov Disord 2011: 26. [2] Klingelhoefer L., Warner T., Martino D., Martinez-Martin P., Hulse N., Inniss R., Samuel M., Ray Chaudhuri K., Evaluation of the use of a Dystonia Non Motor Symptom Questionnaire for craniocervical dystonia in the outpatient clinic. Mov Disord 2014: 29.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/multicenter-report-of-clinical-use-of-a-non-motor-symptom-questionnaire-for-craniocervical-dystonia-the-dnms-quest/