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Quality of life in Huntington's disease: critique and recommendations for measures assessing patient health‐related quality of life and caregiver quality of life

Mestre, T. A., Carlozzi, N. E., Ho, A. K., Burgunder, J.-M., Walker, F., Davis, A. M., Busse, M., Quinn, L., Rodrigues, F. B., Sampaio, C., Goetz, C. G., Cubo, E., Martinez-Martin, P. and Stebbins, G. T. (2018) Quality of life in Huntington's disease: critique and recommendations for measures assessing patient health‐related quality of life and caregiver quality of life. Movement Disorders. ISSN 0885-3185

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To link to this item DOI: 10.1002/mds.27317

Abstract/Summary

The compromise of quality of life (QoL) in Huntington’s disease (HD) is a major issue, both for individuals with the disease as well as for their caregivers. The International Parkinson and Movement Disorder Society (MDS) commissioned a review of the use and clinimetric validation status of measures used in HD to assess aspects related with QoL, and to make recommendations on their use following standardized criteria. We included both patientcentered measures (patient Health-related (HR) QoL measures) and caregiver-centered measures (caregiver QoL measures). After conducting a systematic literature search, we included 12 measures of patient HRQoL and 2 measures of caregiver QoL. Regarding patientcentered measures, the Medical Outcomes Study 36-Item Short-Form Health Survey is “recommended” as a generic assessment of HRQoL in patients with HD. The 12-Item Short Form Health Survey, the Sickness Impact Profile, the 12-item World Health Organization Disability Assessment Schedule, and the Huntington's Disease Health-Related Quality of Life questionnaire are “suggested”. No caregiver-centered QoL measure obtained a “recommended” status. The Alzheimer’s Carer’s Quality of Life Inventory and the Huntington's Disease Quality of Life Battery for Carers are “suggested”. Recognizing that the assessment of patient HRQoL can be challenging in HD, as patients may lack insight and there is insufficient clinimetric testing of these scales, the committee concluded that further validation of currently available HRQoL measures should be undertaken, namely, those HDspecific HRQoL measures that have recently been reported and used.

Item Type:Article
Refereed:Yes
Divisions:Interdisciplinary centres and themes > Centre for Literacy and Multilingualism
Faculty of Life Sciences > School of Psychology and Clinical Language Sciences > Ageing
Interdisciplinary centres and themes > Institute for Food, Nutrition and Health (IFNH)
Faculty of Life Sciences > School of Psychology and Clinical Language Sciences > Department of Psychology
Faculty of Life Sciences > School of Psychology and Clinical Language Sciences > Psychopathology and Affective Neuroscience
Faculty of Life Sciences > School of Psychology and Clinical Language Sciences > Nutrition and Health
Faculty of Life Sciences > School of Psychology and Clinical Language Sciences > Social
ID Code:74254
Publisher:Wiley

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