Disease Burden of Huntington’s Disease (HD) on People Living with HD and Care Partners in Canada

IF 2.1 Q3 NEUROSCIENCES

Journal of Huntington's disease Pub Date : 2022-03-23 DOI:10.3233/jhd-210505

E. Shaw, Michelle Mayer, P. Ekwaru, S. McMullen, E. Graves, Jennifer W. Wu, Nathalie Budd, B. Maturi, T. Cowling, T. Mestre

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引用次数: 1

Abstract

Background: Huntington’s 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–November 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’s 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 –Physical 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.

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加拿大亨廷顿舞蹈症患者及其护理伙伴的疾病负担

背景：亨廷顿舞蹈症（HD）已在国际上被证明会降低患者和护理伙伴的健康相关生活质量（HRQoL）并影响医疗资源利用率（HRU），但尚未在加拿大进行专门研究。目的：描述加拿大HD患者和HD患者的护理伙伴的HD负担。方法：通过患者组织分发一项在线调查（2020年9月14日至11月23日），以收集人口统计学和临床特征数据，以及：HRQoL，使用36项简式健康调查（SF-36v1）测量；使用客户服务收据清单（CSRI）测量的HRU；以及护理伙伴负担，使用护理人员紧张指数（CSI）和护理人员亨廷顿舞蹈症生活质量电池（HDQoL-C）测量。描述性统计用于报告数据和比较亚组。结果：共有62名HD成年患者（或其代理人）和48名护理伙伴符合规定的资格标准。HD患者和护理伙伴受访者的平均[标准差]年龄分别为51.2[13.8]和58.1[13.9]岁。对于HD患者，最高的HRQoL负担（即最低得分）是SF-36v1角色-身体量表（46.8[42.9]）。对于经历过运动发作转变的受访者，某些服务（如全科医生就诊）的HRU更高。如CSI所示，在护理伙伴中，55.3%的人经历了高压力。HDQoL-C在生活感受方面表现出最大的HRQoL负担（45.1[17.9]）。结论：这项研究量化了加拿大HD患者和护理伙伴的巨大负担，解决了可能影响医疗服务可用性和获得性的关键知识差距。

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来源期刊

Journal of Huntington's disease NEUROSCIENCES-

CiteScore

4.80

自引率

9.70%

发文量