King's College London

Background: Non-motor symptoms (NMS) in patients with dystonia have a relevant impact on health-related quality of life; however, a comprehensive easy to use NMS assessment tool for clinical bedside use is currently not available. Objective: The validated German version of the dystonia non-motor symptoms questionnaire (DNMSQuest) for assessing NMS in craniocervical dystonia is presented. Methods: The DNMSQuest in the German language was developed based on internationally recognized standards for intercultural adaptation of self-completed patient questionnaires. Translation of the original English questionnaire into the German language as well as back translation to English was carried out independently by four bilingual specialists in neurological movement disorders. In each case a consensus version accepted by each translator was created by another neurologist. The back translated English version was compared with the original English questionnaire for relevant linguistic and content discrepancies by a neurologist who was significantly involved in the development of the original questionnaire. The final German version was used in 130 patients with cervical dystonia and 48 healthy controls in an international, multicenter validation study. Results: An interculturally adapted validated version of the DNMSQuest in the German and English languages was developed for rapid bedside assessment and evaluation of NMS in cervical dystonia. Conclusion: The DNMSQuest successfully bridges the current gap of a validated disease-specific, patient self-administered, short, comprehensive questionnaire for NMS assessment in routine clinical practice in craniocervical dystonia. It is envisaged that this tool will be useful for the clinical practice and trials.