ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research

ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research
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DOI:
10.1007/s11136-012-0344-y
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发表时间:
2013-10-01
影响因子:
3.5
通讯作者:
Butt, Zeeshan
Butt, Zeeshan
中科院分区:
医学2区
文献类型:
--
作者:
Reeve, Bryce B.;Wyrwich, Kathleen W.;Butt, Zeeshan

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以患者为中心的结果研究(PCOR)和比较有效性研究(CER)的一个重要方面是将患者的观点和经验与临床数据相结合,以评估干预措施。因此,PCOR和CER需要适当采集患者报告结局(PRO)数据,以告知研究、医疗服务和政策。该计划的目标是确定设计和选择用于PCOR和CER的PRO措施的最低标准。我们进行了文献综述,以找到选择PRO措施的现有指南。我们还对国际生活质量研究学会(ISOQOL)成员进行了一次在线调查,以征求对PRO标准的意见。当> 50%的受访者认可某项标准为“作为最低标准所需的”时,该标准被指定为“推荐的”。“文献综述确定了387篇文章。调查回应率为120的506 ISOQOL成员。受访者平均有15年的PRO研究经验,89%的人认为有能力或非常有能力提供反馈。PRO测量标准的最终建议包括:概念和测量模型的文件;可靠性,有效性的证据(内容效度、结构效度、反应效度);制定这些最低测量标准旨在促进PRO测量的适当使用,以告知PCOR和CER,这又可以提高医疗保健提供的有效性和效率。下一步是扩大这些最低标准,以确定选择与决策相关的PRO措施的最佳做法。
An essential aspect of patient-centered outcomes research (PCOR) and comparative effectiveness research (CER) is the integration of patient perspectives and experiences with clinical data to evaluate interventions. Thus, PCOR and CER require capturing patient-reported outcome (PRO) data appropriately to inform research, healthcare delivery, and policy. This initiative's goal was to identify minimum standards for the design and selection of a PRO measure for use in PCOR and CER.We performed a literature review to find existing guidelines for the selection of PRO measures. We also conducted an online survey of the International Society for Quality of Life Research (ISOQOL) membership to solicit input on PRO standards. A standard was designated as "recommended" when > 50 % respondents endorsed it as "required as a minimum standard."The literature review identified 387 articles. Survey response rate was 120 of 506 ISOQOL members. The respondents had an average of 15 years experience in PRO research, and 89 % felt competent or very competent providing feedback. Final recommendations for PRO measure standards included: documentation of the conceptual and measurement model; evidence for reliability, validity (content validity, construct validity, responsiveness); interpretability of scores; quality translation, and acceptable patient and investigator burden.The development of these minimum measurement standards is intended to promote the appropriate use of PRO measures to inform PCOR and CER, which in turn can improve the effectiveness and efficiency of healthcare delivery. A next step is to expand these minimum standards to identify best practices for selecting decision-relevant PRO measures.