Medlior Health Outcomes Research Ltd., Calgary, AB, Canada.
Hoffmann-La Roche Ltd., Mississauga, ON, Canada.
J Huntingtons Dis. 2022;11(2):179-193. doi: 10.3233/JHD-210505.
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.
To characterize the burden of HD on individuals with HD and care partners of individuals with HD in Canada.
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.
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]).
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.
亨廷顿病（HD）已被证明会降低国际上患者和患者照护者的健康相关生活质量（HRQoL）并影响其医疗资源的利用（HRU），但在加拿大特定环境下尚未进行专门研究。
描述加拿大 HD 患者及其照护者的 HD 负担。
通过患者组织在线分发（2020 年 9 月 14 日至 11 月 23 日）调查问卷，收集人口统计学和临床特征以及以下方面的数据：使用 36 项简短健康调查（SF-36v1）测量的 HRQoL；使用客户服务收据清单（CSRI）测量的 HRU；使用 caregiver 压力指数（CSI）和亨廷顿病照护者生活质量量表（HDQoL-C）测量的 care partner 负担。使用描述性统计数据报告数据并比较亚组。
共有 62 名符合条件的 HD 成年患者（或其代理人）及其 48 名照护者参与了研究。HD 患者和照护者受访者的平均[标准差]年龄分别为 51.2[13.8]和 58.1[13.9]岁。对于 HD 患者，SF-36v1 角色-身体量表（46.8[42.9]）的 HRQoL 负担最大（即得分最低）。对于经历过运动起始转换的受访者，一些服务（例如全科医生就诊）的 HRU 更高。在照护者中，55.3%的人存在高压力，CSI 显示出这一结果。HDQoL-C 在生活感受方面显示出最大的 HRQoL 负担（45.1[17.9]）。
本研究量化了加拿大 HD 患者及其照护者的巨大负担，填补了可能影响医疗保健服务可及性和可获得性的重要知识空白。
