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International Consortium for Health Outcomes Measurement (ICHOM): Standardized Patient-Centered Outcomes Measurement Set for Heart Failure Patients.
JACC: Heart Failure ( IF 10.3 ) Pub Date : 2019-12-03 , DOI: 10.1016/j.jchf.2019.09.007 Daniel J P Burns 1 , Jason Arora 2 , Oluwakemi Okunade 2 , John F Beltrame 3 , Sabrina Bernardez-Pereira 4 , Marisa G Crespo-Leiro 5 , Gerasimos S Filippatos 6 , Suzanna Hardman 7 , Arno W Hoes 8 , Stephen Hutchison 9 , Mariell Jessup 10 , Tina Kinsella 11 , Michael Knapton 12 , Carolyn S P Lam 13 , Frederick A Masoudi 14 , Hugh McIntyre 15 , Richard Mindham 11 , Louise Morgan 16 , Luuk Otterspoor 17 , Victoria Parker 18 , Hans E Persson 19 , Claude Pinnock 2 , Christopher M Reid 20 , Jillian Riley 21 , Lynne W Stevenson 22 , Theresa A McDonagh 23
JACC: Heart Failure ( IF 10.3 ) Pub Date : 2019-12-03 , DOI: 10.1016/j.jchf.2019.09.007 Daniel J P Burns 1 , Jason Arora 2 , Oluwakemi Okunade 2 , John F Beltrame 3 , Sabrina Bernardez-Pereira 4 , Marisa G Crespo-Leiro 5 , Gerasimos S Filippatos 6 , Suzanna Hardman 7 , Arno W Hoes 8 , Stephen Hutchison 9 , Mariell Jessup 10 , Tina Kinsella 11 , Michael Knapton 12 , Carolyn S P Lam 13 , Frederick A Masoudi 14 , Hugh McIntyre 15 , Richard Mindham 11 , Louise Morgan 16 , Luuk Otterspoor 17 , Victoria Parker 18 , Hans E Persson 19 , Claude Pinnock 2 , Christopher M Reid 20 , Jillian Riley 21 , Lynne W Stevenson 22 , Theresa A McDonagh 23
Affiliation
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Whereas multiple national, international, and trial registries for heart failure have been created, international standards for clinical assessment and outcome measurement do not currently exist. The working group's objective was to facilitate international comparison in heart failure care, using standardized parameters and meaningful patient-centered outcomes for research and quality of care assessments. The International Consortium for Health Outcomes Measurement recruited an international working group of clinical heart failure experts, researchers, and patient representatives to define a standard set of outcomes and risk-adjustment variables. This was designed to document, compare, and ultimately improve patient care outcomes in the heart failure population, with a focus on global feasibility and relevance. The working group employed a Delphi process, patient focus groups, online patient surveys, and multiple systematic publications searches. The process occurred over 10 months, employing 7 international teleconferences. A 17-item set has been established, addressing selected functional, psychosocial, burden of care, and survival outcome domains. These measures were designed to include all patients with heart failure, whether entered at first presentation or subsequent decompensation, excluding cardiogenic shock. Sources include clinician report, administrative data, and validated patient-reported outcome measurement tools: the Kansas City Cardiomyopathy Questionnaire; the Patient Health Questionnaire-2; and the Patient-Reported Outcomes Measurement Information System. Recommended data included those to support risk adjustment and benchmarking across providers and regions. The International Consortium for Health Outcomes Measurement developed a dataset designed to capture, compare, and improve care for heart failure, with feasibility and relevance for patients and clinicians worldwide.
中文翻译：
国际健康结果测量联盟 (ICHOM)：针对心力衰竭患者的以患者为中心的标准化结果测量集。
尽管已经建立了多个国家、国际和心力衰竭试验注册中心，但目前尚不存在临床评估和结果测量的国际标准。该工作组的目标是利用标准化参数和有意义的以患者为中心的结果进行研究和护理质量评估，促进心力衰竭护理的国际比较。国际健康结果测量联盟招募了一个由临床心力衰竭专家、研究人员和患者代表组成的国际工作组，以定义一套标准的结果和风险调整变量。其目的是记录、比较并最终改善心力衰竭人群的患者护理结果，重点关注全球可行性和相关性。该工作组采用了德尔菲流程、患者焦点小组、在线患者调查和多种系统出版物搜索。该过程历时 10 多个月，召开了 7 场国际电话会议。已经建立了 17 个项目集，涉及选定的功能、社会心理、护理负担和生存结果领域。这些措施旨在包括所有心力衰竭患者，无论是首次就诊还是随后失代偿，不包括心源性休克。来源包括临床医生报告、管理数据和经过验证的患者报告的结果测量工具：堪萨斯城心肌病问卷；患者健康调查问卷 2；和患者报告结果测量信息系统。推荐的数据包括支持跨提供商和地区的风险调整和基准测试的数据。国际健康结果测量联盟开发了一个数据集，旨在捕获、比较和改善心力衰竭的护理，对全世界的患者和临床医生具有可行性和相关性。
更新日期：2019-12-11
中文翻译：
国际健康结果测量联盟 (ICHOM)：针对心力衰竭患者的以患者为中心的标准化结果测量集。
尽管已经建立了多个国家、国际和心力衰竭试验注册中心，但目前尚不存在临床评估和结果测量的国际标准。该工作组的目标是利用标准化参数和有意义的以患者为中心的结果进行研究和护理质量评估，促进心力衰竭护理的国际比较。国际健康结果测量联盟招募了一个由临床心力衰竭专家、研究人员和患者代表组成的国际工作组，以定义一套标准的结果和风险调整变量。其目的是记录、比较并最终改善心力衰竭人群的患者护理结果，重点关注全球可行性和相关性。该工作组采用了德尔菲流程、患者焦点小组、在线患者调查和多种系统出版物搜索。该过程历时 10 多个月，召开了 7 场国际电话会议。已经建立了 17 个项目集，涉及选定的功能、社会心理、护理负担和生存结果领域。这些措施旨在包括所有心力衰竭患者，无论是首次就诊还是随后失代偿，不包括心源性休克。来源包括临床医生报告、管理数据和经过验证的患者报告的结果测量工具：堪萨斯城心肌病问卷；患者健康调查问卷 2；和患者报告结果测量信息系统。推荐的数据包括支持跨提供商和地区的风险调整和基准测试的数据。国际健康结果测量联盟开发了一个数据集，旨在捕获、比较和改善心力衰竭的护理，对全世界的患者和临床医生具有可行性和相关性。
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