了解患者和医生对类风湿性关节炎创新研究的看法。

Melanie C Baniña,Radhika Prabhune,Catney Charles,Inés Colmegna,Marie Hudson,Sasha Bernatsky,Sandra Peláez
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引用次数: 0

摘要

目的类风湿关节炎(RA)患者的最佳治疗选择尚不清楚。虽然需要实用的随机临床试验(pRCT)和生物标志物驱动试验等新方法来推进个性化RA护理,但最终用户对这些方法的看法尚未得到广泛研究。本研究旨在深入了解患者和医生的观点,以提高未来RA研究创新的成功。方法作为大型pRCT的一部分,我们对17名RA患者进行了三个焦点组的研究,并对来自两所主要大学医院的5名风湿病学家进行了一个焦点组的研究。讨论围绕着创新研究的挑战,采用与患者参与观点一致的自我管理框架,逐字记录并进行主题分析。结果患者的讨论围绕三个主题:(a)患者对医疗管理决策相关信息的偏好;(b)由于治疗相关的挑战而导致必要的行为改变;(c)医患关系作为建设性地接近共同决策的基础。至于医生,他们的讨论分为三个主题:(a)研究对病人医疗管理的影响;(b) pRCT和生物标志物驱动试验的可行性;(c)随机化如何挑战患者的共同决策。结论:患者和医生都担心在临床护理环境中参与研究可能会扰乱日常活动并威胁共同决策。了解患者和医生对pRCT和生物标志物驱动试验的看法是提高这些研究创新成功的关键。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Understanding patient and physician perspectives regarding innovative research in rheumatoid arthritis.
OBJECTIVE The optimal treatment choice for an individual with rheumatoid arthritis (RA) is yet unknown. While novel approaches such as pragmatic randomized clinical trials (pRCT) and biomarker-driven trials are needed to advance personalized RA care, end user views of these approaches have not been extensively studied. This study aimed to gain insight into patients' and physicians' perspectives to enhance the success of future RA research innovations. METHODS As part of a larger pRCT, we conducted three focus groups with 17 patients with RA and one focus group with five rheumatologists from two major university hospitals. The discussions, which revolved around the challenges of innovative research, were verbatim transcribed and thematically analyzed adopting a self-management framework aligned with a patient engagement perspective. RESULTS Patients' discussions revolved around three themes: (a) patients' preferences for information related to medical management decision-making; (b) necessary behavior change due to treatment-related challenges; and (c) patient-physician relationship as a foundation for constructively approaching shared decision-making. As for physicians, their discussion was organized into three themes: (a) the impact of research on medical management of a patient; (b) feasibility of pRCT and biomarker-driven trials; and (c) how randomization could challenge shared decision-making with patients. CONCLUSION Patients and physicians shared their concerns regarding how being part of research in the setting of clinical care could disrupt day-to-day activities and threaten shared decision-making. Understanding patients' and physicians' perspectives regarding pRCT and biomarker-driven trials is key to enhance the success of these research innovations.
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