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Quality of Life in Huntington’s Disease: Critique and Recommendations for Measures Assessing Patient Healthâ Related Quality of Life and Caregiver Quality of Life
dc.contributor.authorMestre, Tiago A.
dc.contributor.authorCarlozzi, Noelle E.
dc.contributor.authorHo, Aileen K.
dc.contributor.authorBurgunder, Jean‐marc
dc.contributor.authorWalker, Francis
dc.contributor.authorDavis, Aileen M.
dc.contributor.authorBusse, Monica
dc.contributor.authorQuinn, Lori
dc.contributor.authorRodrigues, Filipe B.
dc.contributor.authorSampaio, Cristina
dc.contributor.authorGoetz, Christopher G.
dc.contributor.authorCubo, Esther
dc.contributor.authorMartinez‐martin, Pablo
dc.contributor.authorStebbins, Glenn T.
dc.date.accessioned2018-06-11T18:00:38Z
dc.date.available2019-07-01T14:52:17Zen
dc.date.issued2018-05
dc.identifier.citationMestre, Tiago A.; Carlozzi, Noelle E.; Ho, Aileen K.; Burgunder, Jean‐marc ; Walker, Francis; Davis, Aileen M.; Busse, Monica; Quinn, Lori; Rodrigues, Filipe B.; Sampaio, Cristina; Goetz, Christopher G.; Cubo, Esther; Martinez‐martin, Pablo ; Stebbins, Glenn T. (2018). "Quality of Life in Huntington’s Disease: Critique and Recommendations for Measures Assessing Patient Healthâ Related Quality of Life and Caregiver Quality of Life." Movement Disorders 33(5): 742-749.
dc.identifier.issn0885-3185
dc.identifier.issn1531-8257
dc.identifier.urihttps://hdl.handle.net/2027.42/144302
dc.description.abstractThe 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 patientâ centered measures (patient healthâ related qualityâ ofâ life measures) and caregiverâ centered measures (caregiver qualityâ ofâ life measures). After conducting a systematic literature search, we included 12 measures of patient healthâ related quality of life and 2 measures of caregiver quality of life. Regarding patientâ centered measures, the Medical Outcomes Study 36â Item Shortâ Form Health Survey is â recommendedâ as a generic assessment of healthâ related quality of life in patients with Huntington’s disease. The 12â Item Short Form Health Survey, the Sickness Impact Profile, the 12â item World Health Organization Disability Assessment Schedule, and the Huntington’s Disease Healthâ Related Quality of Life questionnaire are â suggested.â No caregiverâ centered qualityâ ofâ life measure obtained a â recommendedâ status. The Alzheimer’s Carer’s Quality of Life Inventory and the Huntington’s Disease Quality of Life Battery for Carers are â suggested.â Recognizing that the assessment of patient healthâ related 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 healthâ related qualityâ ofâ life measures should be undertaken, namely, those Huntington’s diseaseâ specific healthâ related qualityâ ofâ life measures that have recently been reported and used. © 2018 International Parkinson and Movement Disorder Society
dc.publisherWiley Periodicals, Inc.
dc.publisherOxford: Oxford University Press
dc.subject.otherHuntington’s disease
dc.subject.otherquality of life
dc.subject.otherrating scales
dc.subject.otherpatientâ centered outcomes
dc.subject.othercaregiverâ centered outcomes
dc.titleQuality of Life in Huntington’s Disease: Critique and Recommendations for Measures Assessing Patient Healthâ Related Quality of Life and Caregiver Quality of Life
dc.typeArticleen_US
dc.rights.robotsIndexNoFollow
dc.subject.hlbtoplevelHealth Sciences
dc.description.peerreviewedPeer Reviewed
dc.description.bitstreamurlhttps://deepblue.lib.umich.edu/bitstream/2027.42/144302/1/mds27317_am.pdf
dc.description.bitstreamurlhttps://deepblue.lib.umich.edu/bitstream/2027.42/144302/2/mds27317.pdf
dc.identifier.doi10.1002/mds.27317
dc.identifier.sourceMovement Disorders
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dc.owningcollnameInterdisciplinary and Peer-Reviewed


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