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行动呼吁:如何改善患者报告结局的使用以指导类风湿关节炎的临床决策。

Call for action: how to improve use of patient-reported outcomes to guide clinical decision making in rheumatoid arthritis.

机构信息

Institut Pierre Louis d'Epidémiologie et de Santé Publique, Sorbonne Universités, UPMC Universitaire Paris 06, Paris, France.

Department of Rheumatology, Pitié-Salpêtrière Hospital, Assistance Publique-Hôpitaux de Paris, Paris, France.

出版信息

Rheumatol Int. 2018 Jun;38(6):935-947. doi: 10.1007/s00296-018-4005-5. Epub 2018 Mar 21.

Abstract

Current guidelines for the management of rheumatoid arthritis (RA) recommend early treatment and a treat-to-target goal of remission or low disease activity. Over the past decade, this approach has been extremely successful in reducing disease activity and joint damage in patients with RA. At the same time, however, overall patient perception of well-being appears to have decreased with respect to outcome measures considered important by patients themselves, such as pain, fatigue, physical function and quality of life. The timely and effective use of patient-reported outcomes (PROs) could encourage physicians to focus more on the impact of RA on patients and how patients are feeling. This in turn would facilitate shared decision making between patients and physicians, ultimately leading to a more patient-centered approach and improved patient care. Indeed, PROs provide information about individual patients that complements information provided by physical assessment and composite scores, and can also be used to guide patient care, such as determining whether a clinic visit is needed or whether treatment modifications are necessary. This is particularly important for patients who do not achieve the aspirational target of remission or low disease activity with pharmacological treatment. A number of validated PRO questionnaires are available, but how and which PROs should be incorporated into rheumatology clinical practice as part of the decision-making process is still controversial. Combining PROs with technology, such as computer adaptive tests, electronic PRO systems, web-based platforms and patient dashboards, could further aid PRO integration into daily rheumatology clinical practice.

摘要

目前类风湿关节炎 (RA) 的管理指南建议早期治疗,并以缓解或低疾病活动度为治疗目标。在过去的十年中,这种方法在降低 RA 患者的疾病活动度和关节损伤方面取得了巨大成功。然而,与此同时,患者对自身重要的结局指标(如疼痛、疲劳、身体功能和生活质量)的整体幸福感似乎有所下降。及时有效地使用患者报告的结局 (PROs) 可以鼓励医生更加关注 RA 对患者的影响以及患者的感受。这反过来又可以促进医患之间的共同决策,最终实现更以患者为中心的方法和改善患者护理。事实上,PROs 提供了关于个体患者的信息,补充了体格检查和综合评分提供的信息,还可以用于指导患者护理,例如确定是否需要就诊或是否需要治疗调整。对于那些通过药物治疗无法达到缓解或低疾病活动度的理想目标的患者来说,这一点尤其重要。有许多经过验证的 PRO 问卷可用,但如何以及将哪些 PRO 纳入风湿病临床实践作为决策过程的一部分仍然存在争议。将 PRO 与技术(如计算机自适应测试、电子 PRO 系统、基于网络的平台和患者仪表板)相结合,可以进一步帮助将 PRO 整合到日常风湿病临床实践中。

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