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Patients' perspectives related to ethical issues and risks in precision medicine: a systematic review.患者对精准医学中伦理问题和风险的看法:一项系统综述
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本文引用的文献

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Reporting Survey Based Studies - a Primer for Authors.报告基于调查的研究——作者指南。
J Korean Med Sci. 2020 Nov 23;35(45):e398. doi: 10.3346/jkms.2020.35.e398.
2
Right drug, right patient, right time: aspiration or future promise for biologics in rheumatoid arthritis?正确的药物、正确的患者、正确的时间:生物制剂在类风湿关节炎中的应用前景如何?
Arthritis Res Ther. 2017 Oct 24;19(1):239. doi: 10.1186/s13075-017-1445-3.
3
Stand Up and Be Counted: Measuring and Mapping the Rheumatology Workforce in Canada.挺身而出,接受统计:加拿大风湿病学劳动力的测量与测绘
J Rheumatol. 2017 Feb;44(2):248-257. doi: 10.3899/jrheum.160621. Epub 2016 Dec 1.
4
Pharmacogenetics: The right drug for you.药物遗传学:适合你的正确药物。
Nature. 2016 Sep 8;537(7619):S60-2. doi: 10.1038/537S60a.
5
Brief Report: Association of Rheumatoid Factor and Anti-Citrullinated Protein Antibody Positivity With Better Effectiveness of Abatacept: Results From the Pan-European Registry Analysis.简要报告:类风湿因子和抗瓜氨酸化蛋白抗体阳性与阿巴西普有效性的相关性:来自泛欧注册分析的结果。
Arthritis Rheumatol. 2016 Jun;68(6):1346-52. doi: 10.1002/art.39595.
6
Biomarkers to guide clinical therapeutics in rheumatology?用于指导风湿病临床治疗的生物标志物?
Curr Opin Rheumatol. 2016 Mar;28(2):168-75. doi: 10.1097/BOR.0000000000000250.
7
Understanding patient and provider perceptions and expectations of genomic medicine.了解患者和医疗服务提供者对基因组医学的认知与期望。
J Surg Oncol. 2015 Jan;111(1):9-17. doi: 10.1002/jso.23712. Epub 2014 Jul 3.
8
ASAS modification of the Berlin algorithm for diagnosing axial spondyloarthritis: results from the SPondyloArthritis Caught Early (SPACE)-cohort and from the Assessment of SpondyloArthritis international Society (ASAS)-cohort.ASAS 对柏林 axial 脊椎关节炎诊断算法的修订:来自早期脊椎关节炎捕捉(SPACE)队列和国际脊椎关节炎评估协会(ASAS)队列的研究结果。
Ann Rheum Dis. 2013 Oct;72(10):1646-53. doi: 10.1136/annrheumdis-2012-201884. Epub 2012 Nov 8.
9
Personalised medicine in Canada: a survey of adoption and practice in oncology, cardiology and family medicine.加拿大的个性化医学:肿瘤学、心脏病学和家庭医学领域的采用和实践调查。
BMJ Open. 2011 Jul 29;1(1):e000110. doi: 10.1136/bmjopen-2011-000110.
10
Life with arthritis in Canada: a personal and public health challenge.加拿大的关节炎生活:一项个人及公共卫生挑战。
Chronic Dis Inj Can. 2011 Jun;31(3):135-6.

加拿大精准医学领域风湿病学家、风湿病专科住院医师和患者的期望与教育需求:一项定量横断面描述性研究

Expectations and educational needs of rheumatologists, rheumatology fellows and patients in the field of precision medicine in Canada, a quantitative cross-sectional and descriptive study.

作者信息

Ruel-Gagné Sophie, Simonyan David, Légaré Jean, Bessette Louis, Fortin Paul R, Lacaille Diane, Dogba Maman Joyce, Michou Laëtitia

机构信息

Division of Rheumatology-R4774, Department of Medicine, CHU de Québec-Université Laval, 2705 Boulevard Laurier, Quebec, QC, G1V 4G2, Canada.

Centre de Recherche du CHU de Québec-Université Laval, Quebec, Canada.

出版信息

BMC Rheumatol. 2021 Nov 29;5(1):52. doi: 10.1186/s41927-021-00222-2.

DOI:10.1186/s41927-021-00222-2
PMID:34839831
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8627786/
Abstract

BACKGROUND

Precision medicine, as a personalized medicine approach based on biomarkers, is a booming field. In general, physicians and patients have a positive attitude toward precision medicine, but their knowledge and experience are limited. In this study, we aimed at assessing the expectations and educational needs for precision medicine among rheumatologists, rheumatology fellows and patients with rheumatic diseases in Canada.

METHODS

We conducted two anonymous online surveys between June and August 2018, one with rheumatologists and fellows and one with patients assessing precision medicine expectations and educational needs. Descriptive statistics were performed.

RESULTS

45 rheumatologists, 6 fellows and 277 patients answered the survey. 78% of rheumatologists and fellows and 97.1% of patients would like to receive training on precision medicine. Most rheumatologists and fellows agreed that precision medicine tests are relevant to medical practice (73.5%) with benefits such as helping to determine prognosis (58.9%), diagnosis (79.4%) and avoid treatment toxicity (61.8%). They are less convinced of their usefulness in helping to choose the most effective treatment and to improve patient adherence (23.5%). Most patients were eager to take precision medicine tests that could predict disease prognosis (92.4%), treatment response (98.1%) or drug toxicity (93.4%), but they feared potential negative impacts like loss of insurability (62.2%) and high cost of the test (57.5%).

CONCLUSIONS

Our study showed that rheumatologists and patients in Canada are overall interested in getting additional precision medicine education. Indeed, while convinced of the potential benefits of precision medicine tests, most physicians don't feel confident in their abilities and consider their training insufficient to incorporate them into clinical practice.

摘要

背景

精准医学作为一种基于生物标志物的个性化医疗方法,是一个蓬勃发展的领域。总体而言,医生和患者对精准医学持积极态度,但他们的知识和经验有限。在本研究中,我们旨在评估加拿大风湿病学家、风湿病专科住院医师和风湿病患者对精准医学的期望和教育需求。

方法

我们在2018年6月至8月期间进行了两项匿名在线调查,一项针对风湿病学家和专科住院医师,另一项针对患者,以评估对精准医学的期望和教育需求。进行了描述性统计。

结果

45名风湿病学家、6名专科住院医师和277名患者回答了调查。78%的风湿病学家和专科住院医师以及97.1%的患者希望接受精准医学培训。大多数风湿病学家和专科住院医师认为精准医学检测与医疗实践相关(73.5%),其益处包括有助于确定预后(58.9%)、诊断(79.4%)和避免治疗毒性(61.8%)。他们不太确信其在帮助选择最有效治疗方法和提高患者依从性方面的有用性(23.5%)。大多数患者渴望进行能够预测疾病预后(92.4%)、治疗反应(98.1%)或药物毒性(93.4%)的精准医学检测,但他们担心潜在的负面影响,如失去保险资格(62.2%)和检测成本高昂(57.5%)。

结论

我们的研究表明,加拿大的风湿病学家和患者总体上有兴趣接受更多的精准医学教育。事实上,虽然确信精准医学检测的潜在益处,但大多数医生对自己的能力缺乏信心,并认为他们的培训不足以将其纳入临床实践。