Incorporating the patient's perspective in outcomes research.
Incorporating the patient's perspective in outcomes research.
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DOI：
10.1097/bor.0000000000000372
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发表时间：
2017-03
影响因子：
5.1
通讯作者：
Fraenkel L
中科院分区：
文献类型：
--
作者：
Hsiao B;Fraenkel L
在临床研究中纳入患者的观点对于确保测量的结果反映对患者最重要的结果至关重要。这篇综述总结了最近的努力，包括病人的观点，在发展的结果措施和鼓励病人参与决策和自我管理的重要性。自从将疲劳作为类风湿性关节炎（RA）试验中患者认可的核心结局指标纳入研究以来，OMERACT一直致力于倡导患者参与核心领域和工具的开发;目前的努力包括通过患者的眼睛培养对缓解的理解，并了解如何测量疼痛和“僵硬”的特征，这些特征被认为对患者很重要。在RA患者中进一步探讨了缓解的概念，强调了恢复正常的共同目标;此外，还开发了各种工具来评估风湿病患者未满足的需求。在RA以外的风湿病诊断中，以患者为中心的核心指标的制定和修订也取得了进展。阐明病人的观点现在被认为是结果研究的一个基本特征。未来的研究应该集中在如何最好地让患者参与特定的研究活动。
Incorporation of the patients’ perspective in clinical research is critical to ensure that outcomes measured reflect those, which matter most to patients. This review summarizes recent efforts to include the patients’ perspective in the development of outcome measures and the importance of encouraging patient participation in decision-making and self-management. Since the inclusion of fatigue as a patient-endorsed core outcome measure in rheumatoid arthritis (RA) trials, OMERACT has been instrumental in advocating for patient involvement in the development of core domains and instruments; current endeavors include cultivating an understanding of remission through the eyes of patients and gaining a sense of how to measure features of pain and ‘stiffness’ deemed as important to patients. The concept of remission was further explored in RA patients, highlighting a common goal of returning to normality; additionally, various tools have been developed to assess for unmet needs in rheumatology patients. Advances have also been made in the development and revision of patient-centered core measures in rheumatologic diagnoses outside of RA. Incorporating the patients’ perspective is now considered an essential feature in outcomes research. Future research should focus on how best to involve patients in specific research activities.