{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,9]],"date-time":"2026-07-09T07:19:19Z","timestamp":1783581559028,"version":"3.55.0"},"reference-count":28,"publisher":"MJS Publishing, Medical Journals Sweden AB","license":[{"start":{"date-parts":[[2026,7,9]],"date-time":"2026-07-09T00:00:00Z","timestamp":1783555200000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JRM"],"abstract":"<jats:p>Objective: To describe participation in adults with isolated cervical dystonia and to explore how restrictions are experienced in everyday life.\nDesign: Convergent mixed-methods study with case- and theme-level integration through joint displays.\nSubjects\/Patients: Adults with a self-reported specialist diagnosis of cervical dystonia.\nMethods: Respondents completed an online survey including the Utrecht Scale for Evaluation of Rehabilitation\u2013Participation. A purposive subsample completed semi-structured interviews, analysed using reflexive thematic analysis. Quantitative data were summarized with 95% confidence intervals.\nResults: 108 respondents (73% women; mean age 51.6 [SD 14.1] years; mean disease duration 11.6 [SD 12.8] years) completed the survey. Mean scores indicated low frequency (36.6, 95% CI 34.3\u201338.8), moderate restrictions (67.6, 64.8\u201370.3), and low satisfaction (43.3, 40.5\u201346.1); the productivity domain was the most affected (31.6, 28.7\u201334.5), with leisure (51.3, 48.4\u201354.2) and social participation (51.5, 49.4\u201353.6) less restricted but still constrained. Ten participants were interviewed. Three themes were generated: living with unpredictability; invisibility and contested recognition; and a symptom-focused system in a participation-focused life.\nConclusion: Participation was restricted across everyday domains and shaped by fluctuating symptoms, social recognition, and the structure of available care. Patient-reported participation may be a useful complementary outcome alongside impairment-focused assessment.<\/jats:p>","DOI":"10.2340\/jrm.v58.46205","type":"journal-article","created":{"date-parts":[[2026,7,9]],"date-time":"2026-07-09T06:50:49Z","timestamp":1783579849000},"page":"jrm46205","source":"Crossref","is-referenced-by-count":0,"title":["Participation restrictions in isolated cervical dystonia: a convergent mixed-methods study"],"prefix":"10.2340","volume":"58","author":[{"given":"S\u00f8ren Bruno","family":"Elmgreen","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1183","published-online":{"date-parts":[[2026,7,9]]},"reference":[{"key":"162331","doi-asserted-by":"crossref","unstructured":"Albanese A, Bhatia K, Bressman SB, Delong MR, Fahn S, Fung VSC, et al. Phenomenology and classification of dystonia: a consensus update. Mov Disord 2013; 28: 863\u2013873.","DOI":"10.1002\/mds.25475"},{"key":"162332","doi-asserted-by":"crossref","unstructured":"Castel\u00e3o M, Marques RE, Duarte GS, Rodrigues FB, Ferreira J, Sampaio C, et al. Botulinum toxin type A therapy for cervical dystonia. Cochrane Database Syst Rev 2017; 12: CD003633.","DOI":"10.1002\/14651858.CD003633.pub3"},{"key":"162333","doi-asserted-by":"crossref","unstructured":"Ray S, Pal PK, Yadav R. Non-motor symptoms in cervical dystonia: a review. Ann Indian Acad Neurol 2020; 23: 449\u2013457.","DOI":"10.4103\/aian.AIAN_27_20"},{"key":"162334","doi-asserted-by":"crossref","unstructured":"Girach A, Vinagre Aragon A, Zis P. Quality of life in idiopathic dystonia: a systematic review. J Neurol 2019; 266: 2897\u20132906.","DOI":"10.1007\/s00415-018-9119-x"},{"key":"162335","doi-asserted-by":"crossref","unstructured":"Klingelhoefer L, Kaiser M, Sauerbier A, Untucht R, Wienecke M, Mammadova K, et al. Emotional well-being and pain could be a greater determinant of quality of life compared to motor severity in cervical dystonia. J Neural Transm (Vienna) 2021; 128: 305\u2013314.","DOI":"10.1007\/s00702-020-02274-z"},{"key":"162336","doi-asserted-by":"crossref","unstructured":"Han V, Skorvanek M, Smit M, Turcanova Koprusakova M, Hoekstra T, van Dijk JP, et al. Prevalence of non-motor symptoms and their association with quality of life in cervical dystonia. Acta Neurol Scand 2020; 142: 613\u2013622.","DOI":"10.1111\/ane.13304"},{"key":"162337","doi-asserted-by":"crossref","unstructured":"Zetterberg L, Lindmark B, S\u00f6derlund A, \u00c5senl\u00f6f P. Self-perceived non-motor aspects of cervical dystonia and their association with disability. J Rehabil Med 2012; 44: 950\u2013954.","DOI":"10.2340\/16501977-1055"},{"key":"162338","doi-asserted-by":"crossref","unstructured":"Kamo H, Nagaki K, Kraus AR, Warren L, Wagle Shukla A. Neurorehabilitation in dystonia care: key questions of who benefits, what modalities, and when to intervene. Dystonia 2025; 4: 14695.","DOI":"10.3389\/dyst.2025.14695"},{"key":"162339","unstructured":"World Health Organization. International Classification of Functioning, Disability and Health: ICF. Geneva: World Health Organization; 2001."},{"key":"162340","doi-asserted-by":"crossref","unstructured":"Zetterberg L, Niemi Andersson E, \u00c5senl\u00f6f P, Nyholm D, de Roos P, Bring A. \u201cI\u2019m still the person I am. Not the body it has become.\u201d An active but challenging life with cervical dystonia. Physiother Theory Pract 2025; 41: 763\u2013771.","DOI":"10.1080\/09593985.2024.2359495"},{"key":"162341","doi-asserted-by":"crossref","unstructured":"McCormack D, O\u2019Keeffe F, Eccles FJR. Lived experiences of psychological distress in neck dystonia. Disabil Rehabil 2025; 47: 5816\u20135828.","DOI":"10.1080\/09638288.2025.2536719"},{"key":"162342","doi-asserted-by":"crossref","unstructured":"Post MWM, van der Zee CH, Hennink J, Schafrat CG, Visser-Meily JMA, van Berlekom SB. Validity of the Utrecht Scale for Evaluation of Rehabilitation-Participation. Disabil Rehabil 2012; 34: 478\u2013485.","DOI":"10.3109\/09638288.2011.608148"},{"key":"162343","doi-asserted-by":"crossref","unstructured":"O\u2019Cathain A, Murphy E, Nicholl J. The quality of mixed methods studies in health services research. J Health Serv Res Policy 2008; 13: 92\u201398.","DOI":"10.1258\/jhsrp.2007.007074"},{"key":"162344","doi-asserted-by":"crossref","unstructured":"Tovin MM, Wormley ME. Systematic development of standards for mixed methods reporting in rehabilitation health sciences research. 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Muscle Nerve 2018; 58: 805\u2013811.","DOI":"10.1002\/mus.26201"},{"key":"162357","doi-asserted-by":"crossref","unstructured":"Kruisheer EM, Huenges Wajer IMC, Visser-Meily JMA, Post MWM. Course of participation after subarachnoid hemorrhage. J Stroke Cerebrovasc Dis 2017; 26: 1000\u20131006.","DOI":"10.1016\/j.jstrokecerebrovasdis.2016.11.124"},{"key":"162358","doi-asserted-by":"crossref","unstructured":"Fetters MD, Curry LA, Creswell JW. Achieving integration in mixed methods designs: principles and practices. Health Serv Res 2013; 48: 2134\u20132156.","DOI":"10.1111\/1475-6773.12117"}],"container-title":["Journal of Rehabilitation Medicine"],"original-title":[],"link":[{"URL":"https:\/\/medicaljournalssweden.se\/jrm\/article\/download\/46205\/54737","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/medicaljournalssweden.se\/jrm\/article\/download\/46205\/54737","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,7,9]],"date-time":"2026-07-09T06:50:52Z","timestamp":1783579852000},"score":1,"resource":{"primary":{"URL":"https:\/\/medicaljournalssweden.se\/jrm\/article\/view\/46205"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,7,9]]},"references-count":28,"URL":"https:\/\/doi.org\/10.2340\/jrm.v58.46205","relation":{},"ISSN":["1651-2081"],"issn-type":[{"value":"1651-2081","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,7,9]]}}}