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A new perspective on proxy report: Investigating implicit processes of understanding through patient-proxy congruence.代理报告的新视角:通过患者-代理一致性研究理解的隐性过程。
Qual Life Res. 2015 Nov;24(11):2637-49. doi: 10.1007/s11136-015-1017-4. Epub 2015 Jun 3.
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Family and professionals underestimate quality of life across diverse cultures and health conditions: systematic review.家庭和专业人员低估了不同文化和健康状况下的生活质量:系统评价。
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The case for an international patient-reported outcomes measurement information system (PROMIS®) initiative.支持建立国际患者报告结局测量信息系统(PROMIS®)倡议。
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走向生活质量研究中的正念:关于如何避免严谨变成僵化的观点。

Toward mindfulness in quality-of-life research: perspectives on how to avoid rigor becoming rigidity.

作者信息

Sprangers Mirjam A G, Schwartz Carolyn E

机构信息

Department of Medical Psychology, Academic Medical Center, University of Amsterdam, Meibergdreef 15, 1105 AZ, Amsterdam, The Netherlands.

DeltaQuest Foundation, Inc., Concord, MA, USA.

出版信息

Qual Life Res. 2017 Jun;26(6):1387-1392. doi: 10.1007/s11136-016-1492-2. Epub 2017 Jan 9.

DOI:10.1007/s11136-016-1492-2
PMID:28070804
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC5420379/
Abstract

BACKGROUND

The field of quality-of-life (QOL) research has matured into a discipline with scientific rigor, sophisticated methods, and guidelines. While this maturation is laudable and needed, it can result in a limiting rigidity. We aim to highlight examples of practices that are based on shared research values and principles that, when dogmatically applied, may limit the potential impact of QOL research.

METHODS

By juxtaposing rigorous standards with their rigid application for different stages of the research cycle, we suggest more balanced approaches.

RESULTS

Rigidity in cultivating a research question relates to constraining our thinking, leading to 'safe' research focusing on small variations of similar studies. Rigidity in operationalizing key constructs focuses on problems with validation practices that hinder further innovations, the use of static questionnaires when a more flexible approach is needed, dismissing rarely endorsed items that are clinically relevant, use of insensitive generic measures when specific measures are required, and a rigid emphasis on short questionnaires. Rigidity in data analysis relates to an undue emphasis on delineating primary and secondary outcomes and an unquestioned insistence on reducing Type 1 errors regardless of the research context. Rigidity in research infrastructure focuses on the unquestioned validity of patient input on scientific matters, and increasingly rigid guidelines and checklists that end up driving grant applications.

DISCUSSION

It is hoped that this overview will lead to a reconsideration of a more flexible application of research principles while retaining scientific rigor.

摘要

背景

生活质量(QOL)研究领域已发展成为一门具备科学严谨性、成熟方法及指导原则的学科。尽管这种成熟值得称赞且必要,但可能会导致一种局限性的僵化。我们旨在突出一些基于共同研究价值观和原则的实践案例,这些价值观和原则若被教条式应用,可能会限制生活质量研究的潜在影响。

方法

通过将严格标准与其在研究周期不同阶段的僵化应用并列对比,我们提出更平衡的方法。

结果

在提出研究问题时的僵化涉及限制我们的思维,导致专注于类似研究微小变化的“安全”研究。在关键构念的操作化方面的僵化表现为验证实践存在阻碍进一步创新的问题,在需要更灵活方法时使用静态问卷,摒弃具有临床相关性但很少被认可的项目,在需要特定测量方法时使用不敏感的通用测量方法,以及对简短问卷的僵化强调。数据分析方面的僵化涉及过度强调区分主要和次要结果,以及无论研究背景如何都毫无质疑地坚持减少一类错误。研究基础设施方面的僵化集中在患者对科学问题输入的有效性未经质疑,以及最终导致资助申请受限的日益僵化的指导方针和清单。

讨论

希望本综述能促使人们重新考虑在保持科学严谨性的同时更灵活地应用研究原则。