{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,17]],"date-time":"2026-07-17T11:34:41Z","timestamp":1784288081678,"version":"3.55.0"},"reference-count":57,"publisher":"SAGE Publications","issue":"3","license":[{"start":{"date-parts":[[2016,8,20]],"date-time":"2016-08-20T00:00:00Z","timestamp":1471651200000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Journal of Neuromuscular Diseases"],"published-print":{"date-parts":[[2016,8,30]]},"abstract":"<jats:p>Quality of life and well-being are frequently restricted in adults with neuromuscular disorders. As such, identification of appropriate interventions is imperative. The objective of this paper was to systematically review and critically appraise quantitative studies (RCTs, controlled trials and cohort studies) of psychosocial interventions designed to improve quality of life and well-being in adults with neuromuscular disorders. A systematic review of the published and unpublished literature was conducted. Studies meeting inclusion criteria were appraised using a validated quality assessment tool and results presented in a narrative synthesis. Out of 3,136 studies identified, ten studies met criteria for inclusion within the review. Included studies comprised a range of interventions including: cognitive behavioural therapy, dignity therapy, hypnosis, expressive disclosure, gratitude lists, group psychoeducation and psychologically informed rehabilitation. Five of the interventions were for patients with Amyotrophic Lateral Sclerosis (ALS). The remainder were for patients with post-polio syndrome, muscular dystrophies and mixed disorders, such as Charcot-Marie-Tooth disease, myasthenia gravis and myotonic dystrophy. Across varied interventions and neuromuscular disorders, seven studies reported a short-term beneficial effect of intervention on quality of life and well-being. Whilst such findings are encouraging, widespread issues with the methodological quality of these studies significantly compromised the results. There is no strong evidence that psychosocial interventions improve quality of life and well-being in adults with neuromuscular disorders, due to a paucity of high quality research in this field. Multi-site, randomised controlled trials with active controls, standardised outcome measurement and longer term follow-ups are urgently required.<\/jats:p>","DOI":"10.3233\/jnd-160155","type":"journal-article","created":{"date-parts":[[2016,8,23]],"date-time":"2016-08-23T10:44:42Z","timestamp":1471949082000},"page":"347-362","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":26,"title":["Do Psychosocial Interventions Improve Quality of Life and Wellbeing in Adults           with Neuromuscular Disorders? A Systematic Review and Narrative Synthesis"],"prefix":"10.1177","volume":"3","author":[{"given":"Elaine","family":"Walklet","sequence":"first","affiliation":[{"name":"Health and Social Sciences Department,\r            University of the West of England, Bristol,\r            UK"},{"name":"Psychology Department, University of Worcester, Worcester, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kate","family":"Muse","sequence":"additional","affiliation":[{"name":"Psychology Department, University of Worcester, Worcester, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jane","family":"Meyrick","sequence":"additional","affiliation":[{"name":"Health and Social Sciences Department,\r            University of the West of England, Bristol,\r            UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tim","family":"Moss","sequence":"additional","affiliation":[{"name":"Health and Social Sciences Department,\r            University of the West of England, Bristol,\r            UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2016,8,20]]},"reference":[{"key":"ref001","doi-asserted-by":"publisher","DOI":"10.1046\/j.1600-0404.2003.00185.x"},{"key":"ref002","doi-asserted-by":"publisher","DOI":"10.1212\/01.wnl.0000181027.21574.df"},{"key":"ref003","doi-asserted-by":"publisher","DOI":"10.1016\/0277-9536(95)00112-K"},{"key":"ref004","doi-asserted-by":"publisher","DOI":"10.1056\/NEJM199603283341306"},{"issue":"3","key":"ref005","first-page":"177","volume":"15","author":"Ozer S","year":"2010","journal-title":"Neurosciences"},{"key":"ref006","doi-asserted-by":"publisher","DOI":"10.1007\/s00415-011-6062-5"},{"key":"ref007","doi-asserted-by":"publisher","DOI":"10.1123\/jpah.9.6.896"},{"key":"ref008","doi-asserted-by":"publisher","DOI":"10.1007\/978-3-319-09653-7"},{"key":"ref009","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.d4163"},{"key":"ref010","doi-asserted-by":"publisher","DOI":"10.1007\/s11482-006-9007-x"},{"key":"ref011","doi-asserted-by":"publisher","DOI":"10.1016\/j.paid.2015.02.023"},{"key":"ref012","doi-asserted-by":"publisher","DOI":"10.1001\/archneur.1994.00540130027010"},{"key":"ref013","doi-asserted-by":"publisher","DOI":"10.3109\/09638288.2012.694964"},{"key":"ref014","doi-asserted-by":"publisher","DOI":"10.1002\/mus.24487"},{"key":"ref015","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.55.3.388"},{"key":"ref016","doi-asserted-by":"publisher","DOI":"10.1007\/s12160-009-9092-9"},{"key":"ref017","doi-asserted-by":"publisher","DOI":"10.1177\/0269215513511340"},{"key":"ref018","doi-asserted-by":"publisher","DOI":"10.1002\/14651858.CD005331.pub2"},{"key":"ref019","doi-asserted-by":"publisher","DOI":"10.1016\/S0738-3991(02)00149-0"},{"key":"ref020","doi-asserted-by":"publisher","DOI":"10.1016\/S0738-3991(02)00213-6"},{"key":"ref021","doi-asserted-by":"publisher","DOI":"10.2190\/EUFN-RV1K-Y3TR-FK0L"},{"key":"ref022","doi-asserted-by":"publisher","DOI":"10.3109\/21678421.2015.1062515"},{"key":"ref023","doi-asserted-by":"publisher","DOI":"10.1016\/j.apmr.2007.07.024"},{"key":"ref024","doi-asserted-by":"publisher","DOI":"10.1093\/med\/9780199580354.001.0001"},{"key":"ref025","unstructured":"Centre for Reviews and Dissemination. Systematic reviews: CRD\u2019s guidance\n          for undertaking reviews in health care [Internet]. Centre for Reviews and Dissemination;\n            2009 [cited 2016 January 15]. Available from: http:\/\/www.york.ac.uk\/crd\/SysRev\/!SSL!\/WebHelp\/SysRev3.htm"},{"key":"ref026","unstructured":"ThomasH. Quality assessment           tool for quantitative studies [Internet]. Effective Public Health Practice Project; 2003           [cited 2016 January 15]. Available from: http:\/\/www.ephpp.ca\/PDF\/Quality%20Assessment%20Tool_2010_2.pdf"},{"key":"ref027","unstructured":"HigginsJPT, GreenS           (editors). Cochrane handbook for systematic reviews of interventions version 5. 1.0           [updated March 2011][Internet]. The Cochrane Collaboration; 2011 [cited 2016 January 15].           Available from: www.cochrane-handbook.org"},{"key":"ref028","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.d5928"},{"key":"ref029","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2753.2010.01516.x"},{"key":"ref030","unstructured":"PopayJ, RobertsH, SowdenA, PetticrewM, AraiL,             RodgersM, et             al. Guidance on the conduct of narrative synthesis in systematic             reviews: A product of the ESRC methods programme.             Lancaster: ESRC Method             Programme; 2006."},{"key":"ref031","unstructured":"RyanR Heterogeneity and           subgroup analyses in cochrane consumers and communication review group reviews: Planning           the analysis at protocol stage [online]. Cochrane Consumers and Communication Review           Group; 2014 [cited January 15]. Available from:           http:\/\/cccrg.cochrane.org"},{"key":"ref032","doi-asserted-by":"publisher","DOI":"10.1080\/08870446.2012.754891"},{"key":"ref033","doi-asserted-by":"publisher","DOI":"10.3109\/21678421.2015.1038276"},{"key":"ref034","doi-asserted-by":"publisher","DOI":"10.1177\/1545968315600271"},{"key":"ref035","doi-asserted-by":"publisher","DOI":"10.1037\/0022-3514.84.2.377"},{"key":"ref036","doi-asserted-by":"publisher","DOI":"10.1191\/0269215506cr898oa"},{"key":"ref037","doi-asserted-by":"publisher","DOI":"10.1017\/sjp.2014.89"},{"key":"ref038","doi-asserted-by":"publisher","DOI":"10.3389\/fpsyg.2015.00822"},{"key":"ref039","doi-asserted-by":"publisher","DOI":"10.3109\/09638288.2010.510176"},{"key":"ref040","doi-asserted-by":"publisher","DOI":"10.3389\/fpsyg.2012.00465"},{"key":"ref041","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2014.0213"},{"key":"ref042","doi-asserted-by":"publisher","DOI":"10.1097\/00005650-199206000-00002"},{"key":"ref043","doi-asserted-by":"publisher","DOI":"10.1177\/0269215506071123"},{"key":"ref044","doi-asserted-by":"publisher","DOI":"10.2190\/RHE0-GGH4-410W-LA17"},{"key":"ref045","doi-asserted-by":"crossref","unstructured":"PagniniF, SimmonsZ, CorboM,             MolinariE .             Amyotrophic lateral sclerosis: Time for research on psychological             intervention? Amyotroph Lateral Scler             (2012;13(5):416\u20137.             doi: 10.3109\/17482968.2011.653572","DOI":"10.3109\/17482968.2011.653572"},{"key":"ref046","doi-asserted-by":"publisher","DOI":"10.1177\/1359105308093860"},{"key":"ref047","doi-asserted-by":"publisher","DOI":"10.1002\/mus.23245"},{"key":"ref048","doi-asserted-by":"publisher","DOI":"10.1016\/j.brat.2006.08.008"},{"key":"ref049","doi-asserted-by":"publisher","DOI":"10.1177\/001789699905800310"},{"key":"ref050","doi-asserted-by":"publisher","DOI":"10.3233\/JND-140045"},{"key":"ref051","doi-asserted-by":"publisher","DOI":"10.1007\/BF03161085"},{"key":"ref052","unstructured":"FelgoiseSH, WalshSM, StephensHE, BrothersA, SimmonsZ. The ALS specific           quality of life-revised (ALSSQOL-R) user\u2019s guide [Internet]. 2011 [cited January 15].           Available from:             http:\/\/www.pennstatehershey.org\/c\/documentlibrary\/getfile?uuid=b9de0a6a-9c1d-4f77-bdf0-5c6c846e018e&groupId=22147"},{"key":"ref053","doi-asserted-by":"publisher","DOI":"10.1207\/S15324796ABM2401_06"},{"key":"ref054","doi-asserted-by":"publisher","DOI":"10.1111\/j.1600-0447.1983.tb09716.x"},{"key":"ref055","doi-asserted-by":"publisher","DOI":"10.3109\/02841868809093551"},{"key":"ref056","doi-asserted-by":"publisher","DOI":"10.1207\/s15327752jpa4901_13"},{"key":"ref057","unstructured":"World Health Organization. World Health Organization\n            disabilty assessment schedule: WHODAS II. Geneva: World Health\n            Organization; 2000."}],"container-title":["Journal of Neuromuscular Diseases"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.3233\/JND-160155","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.3233\/JND-160155","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.3233\/JND-160155","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,29]],"date-time":"2026-04-29T23:53:16Z","timestamp":1777506796000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.3233\/JND-160155"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2016,8,20]]},"references-count":57,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2016,8,30]]}},"alternative-id":["10.3233\/JND-160155"],"URL":"https:\/\/doi.org\/10.3233\/jnd-160155","relation":{},"ISSN":["2214-3599","2214-3602"],"issn-type":[{"value":"2214-3599","type":"print"},{"value":"2214-3602","type":"electronic"}],"subject":[],"published":{"date-parts":[[2016,8,20]]}}}