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患者视角:一个用于患者报告结局评估的网站。

PatientViewpoint: a website for patient-reported outcomes assessment.

作者信息

Snyder Claire F, Jensen Roxanne, Courtin S Orion, Wu Albert W

机构信息

Johns Hopkins School of Medicine, Baltimore, MD 21205, USA.

出版信息

Qual Life Res. 2009 Sep;18(7):793-800. doi: 10.1007/s11136-009-9497-8. Epub 2009 Jun 21.


DOI:10.1007/s11136-009-9497-8
PMID:19544089
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC3073983/
Abstract

PURPOSE: To develop a prototype website to collect patient-reported outcomes in outpatient clinical oncology and link the data with the electronic medical record (EMR). METHODS: A multidisciplinary Research Network, including experts in outcomes research, clinical oncology, nursing, social work, information technology, EMRs, behavioral science, decision science, clinical trials, law, and a cancer survivor, was formed to design the prototype website. The Research Network developed the initial website specifications, elicited feedback from patients (n = 20) and clinicians (n = 7), constructed the website, and conducted usability testing (n = 10). RESULTS: Clinicians reported that the website could improve clinical practice if it was not burdensome and were most interested in tracking change over time. Patients were interested in using the website because of the potential to facilitate communication with their clinicians. Patients emphasized the importance of short and simple surveys and a user-friendly interface. The PatientView-oint website was designed to meet these specifications. Usability testing suggested that patients had few problems accessing and using the site. CONCLUSIONS: Preliminary reports from clinicians and patients suggest that a website to collect PROs and link them with the EMR could help improve the quality of cancer care. Further pilot-testing will evaluate the use, usefulness, and acceptability of PatientViewpoint.

摘要

目的:开发一个原型网站,用于收集门诊临床肿瘤学中患者报告的结局,并将数据与电子病历(EMR)相链接。 方法:组建了一个多学科研究网络,其中包括结局研究、临床肿瘤学、护理、社会工作、信息技术、电子病历、行为科学、决策科学、临床试验、法律等领域的专家以及一名癌症幸存者,以设计该原型网站。该研究网络制定了初始网站规范,征求了患者(n = 20)和临床医生(n = 7)的反馈意见,构建了网站,并进行了可用性测试(n = 10)。 结果:临床医生报告称,如果该网站不造成负担,那么它可以改善临床实践,并且他们对追踪随时间的变化最感兴趣。患者因有可能促进与临床医生的沟通而对使用该网站感兴趣。患者强调简短简单的调查问卷以及用户友好界面的重要性。PatientView-oint网站就是为满足这些规范而设计的。可用性测试表明,患者在访问和使用该网站时遇到的问题很少。 结论:临床医生和患者的初步报告表明,一个收集患者报告结局并将其与电子病历相链接的网站有助于提高癌症护理质量。进一步的试点测试将评估PatientViewpoint的使用情况、有用性和可接受性。

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本文引用的文献

[1]
The applications of PROs in clinical practice: what are they, do they work, and why?

Qual Life Res. 2009-2

[2]
The impact of measuring patient-reported outcomes in clinical practice: a systematic review of the literature.

Qual Life Res. 2008-3

[3]
Issues in the design of Internet-based systems for collecting patient-reported outcomes.

Qual Life Res. 2007-10

[4]
Evaluation of an online platform for cancer patient self-reporting of chemotherapy toxicities.

J Am Med Inform Assoc. 2007

[5]
Impact of patient-reported outcome measures on routine practice: a structured review.

J Eval Clin Pract. 2006-10

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Oncol Nurs Forum. 2004-9-17

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Oncol Nurs Forum. 2004-9-17

[8]
Measuring quality of life in routine oncology practice improves communication and patient well-being: a randomized controlled trial.

J Clin Oncol. 2004-2-15

[9]
Health-related quality-of-life assessments and patient-physician communication: a randomized controlled trial.

JAMA. 2002-12-18

[10]
Computer-based quality of life questionnaires may contribute to doctor-patient interactions in oncology.

Br J Cancer. 2002-1-7

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