加拿大亨廷顿舞蹈症患者及其护理伙伴的疾病负担

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
{"title":"加拿大亨廷顿舞蹈症患者及其护理伙伴的疾病负担","authors":"E. Shaw, Michelle Mayer, P. Ekwaru, S. McMullen, E. Graves, Jennifer W. Wu, Nathalie Budd, B. Maturi, T. Cowling, T. Mestre","doi":"10.3233/jhd-210505","DOIUrl":null,"url":null,"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.","PeriodicalId":16042,"journal":{"name":"Journal of Huntington's disease","volume":"11 1","pages":"179 - 193"},"PeriodicalIF":2.1000,"publicationDate":"2022-03-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"1","resultStr":"{\"title\":\"Disease Burden of Huntington’s Disease (HD) on People Living with HD and Care Partners in Canada\",\"authors\":\"E. Shaw, Michelle Mayer, P. Ekwaru, S. McMullen, E. Graves, Jennifer W. Wu, Nathalie Budd, B. Maturi, T. Cowling, T. Mestre\",\"doi\":\"10.3233/jhd-210505\",\"DOIUrl\":null,\"url\":null,\"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.\",\"PeriodicalId\":16042,\"journal\":{\"name\":\"Journal of Huntington's disease\",\"volume\":\"11 1\",\"pages\":\"179 - 193\"},\"PeriodicalIF\":2.1000,\"publicationDate\":\"2022-03-23\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"1\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of Huntington's disease\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.3233/jhd-210505\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q3\",\"JCRName\":\"NEUROSCIENCES\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Huntington's disease","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.3233/jhd-210505","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"NEUROSCIENCES","Score":null,"Total":0}
引用次数: 1

摘要

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。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
查看原文
分享 分享
微信好友 朋友圈 QQ好友 复制链接
本刊更多论文
Disease Burden of Huntington’s Disease (HD) on People Living with HD and Care Partners in Canada
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.
求助全文
通过发布文献求助,成功后即可免费获取论文全文。 去求助
来源期刊
CiteScore
4.80
自引率
9.70%
发文量
60
期刊最新文献
Changes in 24(S)-Hydroxycholesterol Are Associated with Cognitive Performance in Early Huntington's Disease: Data from the TRACK and ENROLL HD Cohorts. Somatic CAG Repeat Stability in a Transgenic Sheep Model of Huntington's Disease. Mono- and Biallelic Inactivation of Huntingtin Gene in Patient-Specific Induced Pluripotent Stem Cells Reveal HTT Roles in Striatal Development and Neuronal Functions. Alterations in Cerebrospinal Fluid Urea Occur in Late Manifest Huntington's Disease. Characterizing Heart Rate Variability Response to Maximal Exercise Testing in People with Huntington's Disease.
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
现在去查看 取消
×
提示
确定
0
微信
客服QQ
Book学术公众号 扫码关注我们
反馈
×
意见反馈
请填写您的意见或建议
请填写您的手机或邮箱
已复制链接
已复制链接
快去分享给好友吧!
我知道了
×
扫码分享
扫码分享
Book学术官方微信
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术
文献互助 智能选刊 最新文献 互助须知 联系我们:info@booksci.cn
Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。
Copyright © 2023 Book学术 All rights reserved.
ghs 京公网安备 11010802042870号 京ICP备2023020795号-1