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为精准医学中的患者偏好留出空间:一项探索类风湿关节炎患者观点的定性研究。

Making space for patients' preferences in precision medicine: a qualitative study exploring perspectives of patients with rheumatoid arthritis.

机构信息

Centre for Research Ethics & Bioethics, Uppsala Universitet, Uppsala, Sweden

Centre for Research Ethics & Bioethics, Uppsala Universitet, Uppsala, Sweden.

出版信息

BMJ Open. 2022 Jun 1;12(6):e058303. doi: 10.1136/bmjopen-2021-058303.

Abstract

OBJECTIVE

Precision medicine in rheumatoid arthritis (RA) creates new opportunities to involve patients in early identification of accurate indicators of health trajectories. The aim of this study was to explore patient perspectives on patient-centredness in precision medicine for RA treatment.

DESIGN

Semistructured interviews were conducted to explore patients' perspectives on a new personalised approach to RA treatment. The interview guide was developed together with patient research partners and health care professionals.

SETTING

An invitation to the interviews was sent through a mobile application. The interviews were one-on-one, using an interview guide with open-ended questions. Interviews were conducted digitally (October 2020-February 2021) via Zoom or telephone, depending on each participant's preferences.

PARTICIPANTS

Patients with RA (N=12) were purposively recruited. Patients were eligible if they had an RA diagnosis, were aged 18-80 years, and understood and expressed themselves in Swedish. Participants and researchers did not know each other prior to the interviews.

RESULTS

Participants expressed desires and needs for patients to have an active role in precision medicine by making shared treatment decisions together with a healthcare professional. In order for that to work, patients need information on potential treatment options, an ability to express their preferences, an individual treatment plan and identification of personal treatment goals. Patients also identified two requirements of healthcare professional in precision medicine: a safe environment to express personal matters and two-way communication with healthcare professionals.

CONCLUSION

Communication between patients and healthcare professionals needs to be more focused on patients' individual treatment preferences and expressed needs, in order to increase patient-centredness in treatment decisions, so shared decision-making can become a reality. More research is needed to design multifaceted implementation strategies to support patients and healthcare professionals to increase patient-centredness throughout treatment personalisation.

摘要

目的

类风湿关节炎(RA)精准医学为患者参与早期识别健康轨迹的准确指标提供了新的机会。本研究旨在探讨患者对 RA 治疗精准医学中以患者为中心的看法。

设计

采用半结构式访谈探讨患者对 RA 治疗新的个体化方法的看法。访谈指南是与患者研究伙伴和医疗保健专业人员共同制定的。

地点

通过移动应用程序发送访谈邀请。访谈是一对一的,使用带有开放式问题的访谈指南。访谈通过 Zoom 或电话以数字方式进行(2020 年 10 月至 2021 年 2 月),具体取决于每位参与者的偏好。

参与者

RA 患者(N=12)被有目的地招募。患者符合条件的标准为:RA 诊断,年龄 18-80 岁,能够理解和用瑞典语表达自己。参与者和研究人员在访谈之前彼此不认识。

结果

参与者表示希望并需要患者通过与医疗保健专业人员共同做出共同的治疗决策,在精准医学中发挥积极作用。为了实现这一目标,患者需要了解潜在的治疗选择、表达个人偏好的能力、个体化的治疗计划和确定个人治疗目标的信息。患者还确定了精准医学中医疗保健专业人员的两个要求:表达个人问题的安全环境和与医疗保健专业人员的双向沟通。

结论

为了提高治疗决策的以患者为中心程度,使共同决策成为现实,患者和医疗保健专业人员之间的沟通需要更加关注患者的个体治疗偏好和表达的需求。需要进一步研究以设计多方面的实施策略,以支持患者和医疗保健专业人员在整个治疗个性化过程中提高以患者为中心的程度。

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Precision medicine and management of rheumatoid arthritis.精准医学与类风湿关节炎的管理。
J Autoimmun. 2020 Jun;110:102405. doi: 10.1016/j.jaut.2020.102405. Epub 2020 Apr 8.
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Precision medicine in rheumatoid arthritis: are we there yet?类风湿关节炎中的精准医学:我们做到了吗?
Clin Rheumatol. 2019 Nov;38(11):2965-2966. doi: 10.1007/s10067-019-04766-0. Epub 2019 Sep 13.

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