{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,30]],"date-time":"2026-09-30T04:13:46Z","timestamp":1790741626693,"version":"4.1.0"},"reference-count":59,"publisher":"SAGE Publications","issue":"2","license":[{"start":{"date-parts":[[2022,6,3]],"date-time":"2022-06-03T00:00:00Z","timestamp":1654214400000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JHD"],"published-print":{"date-parts":[[2022,6,3]]},"abstract":"<jats:p>Background: Huntington\u2019s disease (HD) has been shown to reduce health-related quality of life (HRQoL) and affect healthcare resource utilization (HRU) among patients and care partners internationally but has not been studied specifically in the Canadian context. Objective: To characterize the burden of HD on individuals with HD and care partners of individuals with HD in Canada. Methods: An online survey was distributed (September 14\u2013November 23, 2020) through patient organizations to collect data on demographic and clinical characteristics, as well as: HRQoL, measured using the 36-Item Short-Form Health Survey (SF-36v1); HRU, measured using the Client Service Receipt Inventory (CSRI); and care partner burden, measured using the Caregiver Strain Index (CSI) and Huntington\u2019s Disease Quality of Life Battery for Carers (HDQoL-C). Descriptive statistics were used to report data and compare subgroups. Results: A total of 62 adult individuals with HD (or their proxies) and 48 care partners met defined eligibility criteria. The mean [standard deviation] age was 51.2 [13.8] and 58.1 [13.9] years for individuals with HD and care partner respondents, respectively. For individuals with HD, the greatest HRQoL burden (i.e., lowest score) was for the SF-36v1 Role \u2013Physical scale (46.8 [42.9]). HRU was higher for some services (e.g., general practitioner visits) for respondents who had experienced motor onset transition. Among care partners, 55.3% experienced high strain, as indicated by the CSI. The HDQoL-C showed the greatest HRQoL burden in feelings about life (45.1 [17.9]). Conclusion: This study quantified the substantial burden on individuals with HD and care partners in Canada, addressing a critical knowledge gap that can affect the availability of and access to healthcare services.<\/jats:p>","DOI":"10.3233\/jhd-210505","type":"journal-article","created":{"date-parts":[[2022,3,25]],"date-time":"2022-03-25T12:53:42Z","timestamp":1648212822000},"page":"179-193","source":"Crossref","is-referenced-by-count":12,"title":["Disease Burden of Huntington\u2019s Disease (HD) on People Living with HD and Care Partners in Canada"],"prefix":"10.1177","volume":"11","author":[{"given":"Eileen","family":"Shaw","sequence":"first","affiliation":[{"name":"Medlior Health Outcomes Research Ltd., Calgary, AB, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michelle","family":"Mayer","sequence":"additional","affiliation":[{"name":"Medlior Health Outcomes Research Ltd., Calgary, AB, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Paul","family":"Ekwaru","sequence":"additional","affiliation":[{"name":"Medlior Health Outcomes Research Ltd., Calgary, AB, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Suzanne","family":"McMullen","sequence":"additional","affiliation":[{"name":"Medlior Health Outcomes Research Ltd., Calgary, AB, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Erin","family":"Graves","sequence":"additional","affiliation":[{"name":"Medlior Health Outcomes Research Ltd., Calgary, AB, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jennifer W.","family":"Wu","sequence":"additional","affiliation":[{"name":"Hoffmann-La Roche Ltd., Mississauga, ON, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nathalie","family":"Budd","sequence":"additional","affiliation":[{"name":"Hoffmann-La Roche Ltd., Mississauga, ON, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bridget","family":"Maturi","sequence":"additional","affiliation":[{"name":"Hoffmann-La Roche Ltd., Mississauga, ON, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tara","family":"Cowling","sequence":"additional","affiliation":[{"name":"Medlior Health Outcomes Research Ltd., Calgary, AB, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tiago A.","family":"Mestre","sequence":"additional","affiliation":[{"name":"Parkinson\u2019s Disease and Movement Disorders Centre, Division of Neurology, Department of Medicine, The Ottawa Hospital Research Institute, University of Ottawa Brain and Mind Research Institute, Ottawa, ON, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","reference":[{"issue":"5","key":"10.3233\/JHD-210505_ref1","doi-asserted-by":"crossref","first-page":"721","DOI":"10.1002\/mds.21920","article-title":"Patient and caregiver 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