了解急性白血病患者的生活质量,一项全球调查。

IF 1.6 Q3 HEALTH CARE SCIENCES & SERVICES
Zack Pemberton-Whiteley, Samantha Nier, Jan Geissler, Sophie Wintrich, Bregje Verhoeven, Rita O Christensen, Sam Salek, Esther Natalie Oliva, Tatyana Ionova, Jennie Bradley
{"title":"了解急性白血病患者的生活质量,一项全球调查。","authors":"Zack Pemberton-Whiteley,&nbsp;Samantha Nier,&nbsp;Jan Geissler,&nbsp;Sophie Wintrich,&nbsp;Bregje Verhoeven,&nbsp;Rita O Christensen,&nbsp;Sam Salek,&nbsp;Esther Natalie Oliva,&nbsp;Tatyana Ionova,&nbsp;Jennie Bradley","doi":"10.17294/2330-0698.1951","DOIUrl":null,"url":null,"abstract":"<p><strong>Purpose: </strong>The Acute Leukemia Advocates Network (ALAN) sought to determine which factors are most associated with poor quality of life (QoL) in patients with acute leukemia and to determine key issues and unmet needs through administration of an online survey distributed worldwide via partner patient organizations.</p><p><strong>Methods: </strong>ALAN developed a questionnaire informed by literature review and based extensively on the hematological malignancy-specific patient-reported outcomes (HM-PRO) measure to assess the impact of acute leukemia on QoL and its relationships with patients' demographics, disease state, disease impact, and support from health care professionals. Univariate and multivariable statistical analysis was used to investigate relationships between HM-PRO scores and the other factors.</p><p><strong>Results: </strong>Of 552 respondents from 42 countries, 332 had acute myeloid leukemia, 139 had acute lymphoblastic leukemia, and 81 had acute promyelocytic leukemia (survey data collected in 2019). Younger age, female gender, and lower income were all significantly negatively associated with QoL. Weak or moderate correlations were observed between overall support, management, and impact of treatment and diagnosis of acute leukemia. Feeling isolated and having reduced ability to carry out physical or enjoyable activities were the most important individual factors, while the best predictors for QoL impact were age, gender, and income (model r<sup>2</sup>=0.16, complete case n=449).</p><p><strong>Conclusions: </strong>Findings indicated key factors, particularly age, gender, and socioeconomic state, that clinicians responsible for the care of patients with acute leukemia should be aware of when designing support strategies. The importance of social functioning in relation to patient QoL also should be included in considerations.</p>","PeriodicalId":16724,"journal":{"name":"Journal of Patient-Centered Research and Reviews","volume":"10 1","pages":"21-30"},"PeriodicalIF":1.6000,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9851391/pdf/jpcrr-10.1.21.pdf","citationCount":"1","resultStr":"{\"title\":\"Understanding Quality of Life in Patients With Acute Leukemia, a Global Survey.\",\"authors\":\"Zack Pemberton-Whiteley,&nbsp;Samantha Nier,&nbsp;Jan Geissler,&nbsp;Sophie Wintrich,&nbsp;Bregje Verhoeven,&nbsp;Rita O Christensen,&nbsp;Sam Salek,&nbsp;Esther Natalie Oliva,&nbsp;Tatyana Ionova,&nbsp;Jennie Bradley\",\"doi\":\"10.17294/2330-0698.1951\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Purpose: </strong>The Acute Leukemia Advocates Network (ALAN) sought to determine which factors are most associated with poor quality of life (QoL) in patients with acute leukemia and to determine key issues and unmet needs through administration of an online survey distributed worldwide via partner patient organizations.</p><p><strong>Methods: </strong>ALAN developed a questionnaire informed by literature review and based extensively on the hematological malignancy-specific patient-reported outcomes (HM-PRO) measure to assess the impact of acute leukemia on QoL and its relationships with patients' demographics, disease state, disease impact, and support from health care professionals. Univariate and multivariable statistical analysis was used to investigate relationships between HM-PRO scores and the other factors.</p><p><strong>Results: </strong>Of 552 respondents from 42 countries, 332 had acute myeloid leukemia, 139 had acute lymphoblastic leukemia, and 81 had acute promyelocytic leukemia (survey data collected in 2019). Younger age, female gender, and lower income were all significantly negatively associated with QoL. Weak or moderate correlations were observed between overall support, management, and impact of treatment and diagnosis of acute leukemia. Feeling isolated and having reduced ability to carry out physical or enjoyable activities were the most important individual factors, while the best predictors for QoL impact were age, gender, and income (model r<sup>2</sup>=0.16, complete case n=449).</p><p><strong>Conclusions: </strong>Findings indicated key factors, particularly age, gender, and socioeconomic state, that clinicians responsible for the care of patients with acute leukemia should be aware of when designing support strategies. The importance of social functioning in relation to patient QoL also should be included in considerations.</p>\",\"PeriodicalId\":16724,\"journal\":{\"name\":\"Journal of Patient-Centered Research and Reviews\",\"volume\":\"10 1\",\"pages\":\"21-30\"},\"PeriodicalIF\":1.6000,\"publicationDate\":\"2023-01-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9851391/pdf/jpcrr-10.1.21.pdf\",\"citationCount\":\"1\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of Patient-Centered Research and Reviews\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.17294/2330-0698.1951\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q3\",\"JCRName\":\"HEALTH CARE SCIENCES & SERVICES\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Patient-Centered Research and Reviews","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.17294/2330-0698.1951","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
引用次数: 1

摘要

目的:急性白血病倡导网络(ALAN)试图确定哪些因素与急性白血病患者生活质量差(QoL)最相关,并通过合作患者组织在全球范围内进行在线调查,确定关键问题和未满足的需求。方法:ALAN在文献回顾的基础上,广泛基于血液恶性肿瘤特异性患者报告结果(HM-PRO)测量,制定了一份调查问卷,以评估急性白血病对生活质量的影响及其与患者人口统计学、疾病状态、疾病影响和卫生保健专业人员支持的关系。采用单变量和多变量统计分析探讨HM-PRO评分与其他因素的关系。结果:来自42个国家的552名受访者中,332人患有急性髓性白血病,139人患有急性淋巴细胞白血病,81人患有急性早幼粒细胞白血病(调查数据收集于2019年)。年龄较小、女性性别、收入较低与生活质量均呈显著负相关。在急性白血病的总体支持、管理、治疗和诊断的影响之间观察到弱或中度相关性。感到孤立和进行体育活动或愉快活动的能力下降是最重要的个人因素,而对生活质量影响的最佳预测因素是年龄、性别和收入(模型r2=0.16,完整病例n=449)。结论:研究结果表明,在设计支持策略时,负责治疗急性白血病患者的临床医生应该意识到关键因素,特别是年龄、性别和社会经济状况。社会功能对患者生活质量的重要性也应纳入考虑范围。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Understanding Quality of Life in Patients With Acute Leukemia, a Global Survey.

Purpose: The Acute Leukemia Advocates Network (ALAN) sought to determine which factors are most associated with poor quality of life (QoL) in patients with acute leukemia and to determine key issues and unmet needs through administration of an online survey distributed worldwide via partner patient organizations.

Methods: ALAN developed a questionnaire informed by literature review and based extensively on the hematological malignancy-specific patient-reported outcomes (HM-PRO) measure to assess the impact of acute leukemia on QoL and its relationships with patients' demographics, disease state, disease impact, and support from health care professionals. Univariate and multivariable statistical analysis was used to investigate relationships between HM-PRO scores and the other factors.

Results: Of 552 respondents from 42 countries, 332 had acute myeloid leukemia, 139 had acute lymphoblastic leukemia, and 81 had acute promyelocytic leukemia (survey data collected in 2019). Younger age, female gender, and lower income were all significantly negatively associated with QoL. Weak or moderate correlations were observed between overall support, management, and impact of treatment and diagnosis of acute leukemia. Feeling isolated and having reduced ability to carry out physical or enjoyable activities were the most important individual factors, while the best predictors for QoL impact were age, gender, and income (model r2=0.16, complete case n=449).

Conclusions: Findings indicated key factors, particularly age, gender, and socioeconomic state, that clinicians responsible for the care of patients with acute leukemia should be aware of when designing support strategies. The importance of social functioning in relation to patient QoL also should be included in considerations.

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
Journal of Patient-Centered Research and Reviews
Journal of Patient-Centered Research and Reviews HEALTH CARE SCIENCES & SERVICES-
自引率
5.90%
发文量
35
审稿时长
20 weeks
×
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
确定
请完成安全验证×
copy
已复制链接
快去分享给好友吧!
我知道了
右上角分享
点击右上角分享
0
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 布克学术 All rights reserved.
京ICP备2023020795号-1
ghs 京公网安备 11010802042870号
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术官方微信