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

Mestre, Tiago, Carlozzi, Noelle, Ho, Aileen, Burgunder, Jean-Marc, Walker, Francis, Davis, Aileen, Busse-Morris, Monica ORCID: https://orcid.org/0000-0002-5331-5909, Quinn, Lori ORCID: https://orcid.org/0000-0002-2982-923X, Rodrigues, Filippe, Sampaio, Christina, Goetz, Christopher, Cubo, Esther, Martinez-Martin, Pablo and Stebbins, Glen 2018. Quality of life measures in Huntington’s Disease: critique and recommendations for measures assessing patient health‐related quality of life and caregiver quality of life. Movement Disorders 33 (5) , pp. 742-749. 10.1002/mds.27317

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Abstract

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‐centered measures (patient health‐related quality‐of‐life measures) and caregiver‐centered measures (caregiver quality‐of‐life measures). After conducting a systematic literature search, we included 12 measures of patient health‐related quality of life and 2 measures of caregiver quality of life. Regarding patient‐centered measures, the Medical Outcomes Study 36‐Item Short‐Form Health Survey is “recommended” as a generic assessment of health‐related quality of life in patients with Huntington's disease. 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 quality‐of‐life 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 health‐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 health‐related quality‐of‐life measures should be undertaken, namely, those Huntington's disease–specific health‐related quality‐of‐life measures that have recently been reported and used.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Medicine
Publisher:	John Wiley & Sons
ISSN:	0885-3185
Date of First Compliant Deposit:	24 November 2017
Date of Acceptance:	22 November 2017
Last Modified:	12 Nov 2024 00:30
URI:	https://orca.cardiff.ac.uk/id/eprint/106954

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