Klingelhoefer, L;
Chaudhuri, KR;
Kamm, C;
Martinez-Martin, P;
Bhatia, K;
Sauerbier, A;
Kaiser, M;
... Reichmann, H; + view all
(2019)
Validation of a self-completed Dystonia Non-Motor Symptoms Questionnaire.
Annals of Clinical and Translational Neurology
, 6
(10)
pp. 2054-2065.
10.1002/acn3.50900.
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Abstract
OBJECTIVES: To develop and validate a novel 14‐item self‐completed questionnaire (in English and German) enquiring about the presence of non‐motor symptoms (NMS) during the past month in patients with craniocervical dystonia in an international multicenter study. METHODS: The Dystonia Non‐Motor Symptoms Questionnaire (DNMSQuest) covers seven domains including sleep, autonomic symptoms, fatigue, emotional well‐being, stigma, activities of daily living, sensory symptoms. The feasibility and clinimetric attributes were analyzed. RESULTS: Data from 194 patients with CD (65.6% female, mean age 58.96 ± 12.17 years, duration of disease 11.95 ± 9.40 years) and 102 age‐ and sex‐matched healthy controls (66.7% female, mean age 55.67 ± 17.62 years) were collected from centres in Germany and the UK. The median total NMS score in CD patients was 5 (interquartile range 3–7), significantly higher than in healthy controls with 1 (interquartile range 0.75–2.25) (P < 0.001, Mann–Whitney U‐test). Evidence for intercorrelation and convergent validity is shown by moderate to high correlations of total DNMSQuest score with motor symptom severity (TWSTRS: r_{s} = 0.61), clinical global impression (r_{s} = 0.40), and health‐related quality of life measures: CDQ‐24 (r_{s} = 0.74), EQ‐5D index (r_{s} = −0.59), and scale (r_{s} = −0.49) (all P < 0.001). Data quality and acceptability was very satisfactory. INTERPRETATION: The DNMSQuest, a patient self‐completed questionnaire for NMS assessment in CD patients, appears robust, reproducible, and valid in clinical practice showing a tangible impact of NMS on quality of life in CD. As there is no specific, comprehensive, validated tool to assess the burden of NMS in dystonia, the DNMSQuest can bridge this gap and could easily be integrated into clinical practice.
| Type: | Article |
|---|---|
| Title: | Validation of a self-completed Dystonia Non-Motor Symptoms Questionnaire |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1002/acn3.50900 |
| Publisher version: | https://doi.org/10.1002/acn3.50900 |
| Language: | English |
| Additional information: | © 2019 The Authors. Annals of Clinical and Translational Neurology published by Wiley Periodicals, Inc on behalf of American Neurological Association. This is an open access article under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/). |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology > Clinical and Movement Neurosciences |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10084478 |
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