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.