{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,30]],"date-time":"2026-09-30T06:13:24Z","timestamp":1790748804131,"version":"4.1.0"},"reference-count":33,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2018,3,23]],"date-time":"2018-03-23T00:00:00Z","timestamp":1521763200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["movementdisorders.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Movement Disorders"],"published-print":{"date-parts":[[2018,5]]},"abstract":"<jats:title>ABSTRACT<\/jats:title><jats:p>The compromise of quality of life in Huntington's disease is a major issue, both for individuals with the disease as well as for their caregivers. The International Parkinson and Movement Disorder Society commissioned a review of the use and clinimetric validation status of measures used in Huntington's disease to assess aspects related with quality of life and to make recommendations on their use following standardized criteria. We included both patient\u2010centered measures (patient health\u2010related quality\u2010of\u2010life measures) and caregiver\u2010centered measures (caregiver quality\u2010of\u2010life measures). After conducting a systematic literature search, we included 12 measures of patient health\u2010related quality of life and 2 measures of caregiver quality of life. Regarding patient\u2010centered measures, the Medical Outcomes Study 36\u2010Item Short\u2010Form Health Survey is \u201crecommended\u201d as a generic assessment of health\u2010related quality of life in patients with Huntington's disease. The 12\u2010Item Short Form Health Survey, the Sickness Impact Profile, the 12\u2010item World Health Organization Disability Assessment Schedule, and the Huntington's Disease Health\u2010Related Quality of Life questionnaire are \u201csuggested.\u201d No caregiver\u2010centered quality\u2010of\u2010life measure obtained a \u201crecommended\u201d status. The Alzheimer's Carer's Quality of Life Inventory and the Huntington's Disease Quality of Life Battery for Carers are \u201csuggested.\u201d Recognizing that the assessment of patient health\u2010related quality of life can be challenging in Huntington's disease, as patients may lack insight and there is insufficient clinimetric testing of these scales, the committee concluded that further validation of currently available health\u2010related quality\u2010of\u2010life measures should be undertaken, namely, those Huntington's disease\u2013specific health\u2010related quality\u2010of\u2010life measures that have recently been reported and used. \u00a9 2018 International Parkinson and Movement Disorder Society<\/jats:p>","DOI":"10.1002\/mds.27317","type":"journal-article","created":{"date-parts":[[2018,3,23]],"date-time":"2018-03-23T15:53:28Z","timestamp":1521820408000},"page":"742-749","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":24,"title":["Quality of Life in Huntington's Disease: Critique and Recommendations for Measures Assessing Patient Health\u2010Related Quality of Life and Caregiver Quality of Life"],"prefix":"10.1002","volume":"33","author":[{"given":"Tiago A.","family":"Mestre","sequence":"first","affiliation":[{"name":"Parkinson's Disease and Movement Disorders Center, Division of Neurology, Department of Medicine, The Ottawa Hospital Research Institute University of Ottawa Brain and Mind Institute Ottawa Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Noelle E.","family":"Carlozzi","sequence":"additional","affiliation":[{"name":"Department of Physical Medicine and Rehabilitation University of Michigan Ann Arbor Michigan USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Aileen K.","family":"Ho","sequence":"additional","affiliation":[{"name":"School of Psychology and Clinical Language Sciences University of Reading Reading UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jean\u2010Marc","family":"Burgunder","sequence":"additional","affiliation":[{"name":"Swiss HD Center, NeuroZentrumSiloah and Department of Neurology University of Bern Bern Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Francis","family":"Walker","sequence":"additional","affiliation":[{"name":"Department of Neurology Wake Forest School of Medicine Winston Salem North Carolina USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Aileen M.","family":"Davis","sequence":"additional","affiliation":[{"name":"Krembil Research Institute, University Health Network and Institute of Health Policy, Management and Evaluation and Rehabilitation Institute University of Toronto Toronto Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Monica","family":"Busse","sequence":"additional","affiliation":[{"name":"Centre for Trials Research Cardiff University Wales UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lori","family":"Quinn","sequence":"additional","affiliation":[{"name":"Department of Biobehavioral Sciences, Teachers College Columbia University New York, NY USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Filipe B.","family":"Rodrigues","sequence":"additional","affiliation":[{"name":"Huntington's Disease Centre, Institute of Neurology University College London London UK"},{"name":"Clinical Pharmacology Unit, Instituto de Medicina Molecular Lisbon Portugal"},{"name":"Laboratory of Clinical Pharmacology and Therapeutics, Faculty of Medicine University of Lisbon Lisbon Portugal"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cristina","family":"Sampaio","sequence":"additional","affiliation":[{"name":"CHDI Foundation\/CHDI Management Princeton New Jersey USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christopher G.","family":"Goetz","sequence":"additional","affiliation":[{"name":"Department of Neurological Sciences Rush University Medical Center Chicago Illinois USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Esther","family":"Cubo","sequence":"additional","affiliation":[{"name":"Department of Neurology Hospital Universit\u00e1rio Hermanos Yag\u00fce Burgos Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Pablo","family":"Martinez\u2010Martin","sequence":"additional","affiliation":[{"name":"National Center of Epidemiology and Centro de Investigaci\u00f3n Biom\u00e9dica en Red sobre Enfermedades Neurodegenerativas (CIBERNED) Carlos III Institute of Health Madrid 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