Victor S. Hvingelby, Lisa Østergaard Bak, Martin Andreasen, Rikke Nan Valdemarsen, Mette Møller, Andreas Nørgaard Glud
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This study was aimed at translating and validating the QUEST and piloting it among Danish ET patients.</p>\n </section>\n \n <section>\n \n <h3> Methods</h3>\n \n <p>The translation and cultural adaptation of the QUEST was carried out per the guidelines of the World Health Organization (WHO) and the International Society of Pharmacoeconomics and Outcomes Research (ISPOR) task force for translation and cultural adaptation. It was subsequently disseminated among a cohort of ET patients.</p>\n </section>\n \n <section>\n \n <h3> Results</h3>\n \n <p>The QUEST was successfully translated and piloted among 112 ET patients. Respondents found the QUEST to be understandable (75/77; 97.4%). For categorical items, there was a high degree of agreement in responses at retest (60.0%–94.0%). According to Cohen′s kappa, agreement was mostly strong. Continuous outcomes were more variable, particularly the subdomains of the functional self-assessment. The mean score for each subdomain ranged from 19.46 (SD 21.87) for work and finance, 24.13 (SD 25.31) for communication, 32.49 (SD 23.21) for psychosocial, 40.21 (SD 34.11) for hobby and leisure, and 42.77 (SD 27.08) for physical. In general, subdomains were weakly to moderately correlated with overall health and QoL.</p>\n </section>\n \n <section>\n \n <h3> Conclusion</h3>\n \n <p>We have successfully translated and validated the QUEST questionnaire for use among Danish ET patients. The questionnaire is now available for Danish clinicians and researchers treating ET patients. The results indicate some unmet needs in the Danish cohort of tremor patients.</p>\n </section>\n </div>","PeriodicalId":6939,"journal":{"name":"Acta Neurologica Scandinavica","volume":"2025 1","pages":""},"PeriodicalIF":1.1000,"publicationDate":"2025-10-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1155/ane/1373319","citationCount":"0","resultStr":"{\"title\":\"Translation and Validation of the Quality of Life in Essential Tremor Rating Scale\",\"authors\":\"Victor S. Hvingelby, Lisa Østergaard Bak, Martin Andreasen, Rikke Nan Valdemarsen, Mette Møller, Andreas Nørgaard Glud\",\"doi\":\"10.1155/ane/1373319\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div>\\n \\n <section>\\n \\n <h3> Background</h3>\\n \\n <p>Essential tremor is a common movement disorder, characterized by kinetic tremor, most commonly of the upper extremities. The Quality of Life in Essential Tremor (QUEST) scale is an oft-used subjective rating scale of tremor severity and quality of life (QoL) in these patients, including for monitoring subjective improvement after advanced treatment. It contains subdomains concerned with overall and health-related QoL, a self-assessment of tremor severity and of the functional impact of tremor on activities of daily living. The questionnaire has not been validated in Danish. This study was aimed at translating and validating the QUEST and piloting it among Danish ET patients.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Methods</h3>\\n \\n <p>The translation and cultural adaptation of the QUEST was carried out per the guidelines of the World Health Organization (WHO) and the International Society of Pharmacoeconomics and Outcomes Research (ISPOR) task force for translation and cultural adaptation. 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Translation and Validation of the Quality of Life in Essential Tremor Rating Scale
Background
Essential tremor is a common movement disorder, characterized by kinetic tremor, most commonly of the upper extremities. The Quality of Life in Essential Tremor (QUEST) scale is an oft-used subjective rating scale of tremor severity and quality of life (QoL) in these patients, including for monitoring subjective improvement after advanced treatment. It contains subdomains concerned with overall and health-related QoL, a self-assessment of tremor severity and of the functional impact of tremor on activities of daily living. The questionnaire has not been validated in Danish. This study was aimed at translating and validating the QUEST and piloting it among Danish ET patients.
Methods
The translation and cultural adaptation of the QUEST was carried out per the guidelines of the World Health Organization (WHO) and the International Society of Pharmacoeconomics and Outcomes Research (ISPOR) task force for translation and cultural adaptation. It was subsequently disseminated among a cohort of ET patients.
Results
The QUEST was successfully translated and piloted among 112 ET patients. Respondents found the QUEST to be understandable (75/77; 97.4%). For categorical items, there was a high degree of agreement in responses at retest (60.0%–94.0%). According to Cohen′s kappa, agreement was mostly strong. Continuous outcomes were more variable, particularly the subdomains of the functional self-assessment. The mean score for each subdomain ranged from 19.46 (SD 21.87) for work and finance, 24.13 (SD 25.31) for communication, 32.49 (SD 23.21) for psychosocial, 40.21 (SD 34.11) for hobby and leisure, and 42.77 (SD 27.08) for physical. In general, subdomains were weakly to moderately correlated with overall health and QoL.
Conclusion
We have successfully translated and validated the QUEST questionnaire for use among Danish ET patients. The questionnaire is now available for Danish clinicians and researchers treating ET patients. The results indicate some unmet needs in the Danish cohort of tremor patients.
期刊介绍：
Acta Neurologica Scandinavica aims to publish manuscripts of a high scientific quality representing original clinical, diagnostic or experimental work in neuroscience. The journal''s scope is to act as an international forum for the dissemination of information advancing the science or practice of this subject area. Papers in English will be welcomed, especially those which bring new knowledge and observations from the application of therapies or techniques in the combating of a broad spectrum of neurological disease and neurodegenerative disorders. Relevant articles on the basic neurosciences will be published where they extend present understanding of such disorders. Priority will be given to review of topical subjects. Papers requiring rapid publication because of their significance and timeliness will be included as ''Clinical commentaries'' not exceeding two printed pages, as will ''Clinical commentaries'' of sufficient general interest. Debate within the speciality is encouraged in the form of ''Letters to the editor''. All submitted manuscripts falling within the overall scope of the journal will be assessed by suitably qualified referees.
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