Feasibility test of a UK-scalable electronic system for regular collection of patient-reported outcome measures and linkage with clinical cancer registry data: The electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system
Feasibility test of a UK-scalable electronic system for regular collection of patient-reported outcome measures and linkage with clinical cancer registry data: The electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system
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DOI：
10.1186/1472-6947-11-66
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发表时间：
2011-10-26
影响因子：
3.5
通讯作者：
Wright, Penny
中科院分区：
文献类型：
--
作者：
Ashley, Laura;Jones, Helen;Wright, Penny
背景资料：癌症幸存者可能面临重大的身体和心理社会挑战;有必要确定和预测哪些幸存者会遇到什么样的困难。正如英国国家癌症生存计划所强调的，需要常规收集诊断后患者报告的结局指标（PROM）;为了提供更多信息，PROM必须与患者的诊断和治疗信息相关联并进行分析。我们已经设计并建立了一个潜在的具有成本效益的英国可扩展的电子系统，用于在定期的诊断后时间点通过互联网收集PROM，将这些数据与癌症登记处的患者临床数据联系起来，并以电子方式管理相关的患者监测和通信;电子患者报告的癌症幸存者结局（ePOCS）系统。本研究的目的是测试的ePOCS系统的可行性，通过运行它在两个约克郡NHS信托2年，并使用北方和约克郡癌症登记和信息Service.Methods/设计：非转移性乳腺癌，结直肠癌和前列腺癌患者（最大的幸存者群体），在6个月内诊断后，将被招募从医院在约克郡癌症网络。参与者将被要求在诊断后15个月内的三个时间点完成PROMS，评估一系列健康相关的生活质量结局，随后通过反馈问卷提供对ePOCS系统的意见。可行性将主要从患者招募和保留率、参与患者的代表性、收集的PROM数据的数量和质量、患者的反馈、基础信息学的成功和可靠性以及系统运行成本等方面进行审查。如果在系统测试过程中产生足够的数据，这些将进行分析，以评估患者报告的健康相关的生活质量结果，并探讨它们是否以及如何与疾病，治疗和/或个体差异characteristics.Discussion：目前没有系统在英国收集PROM在线和链接这些与患者的临床数据在癌症登记处。如果可行，ePOCS有可能提供一个负担得起的英国可扩展的技术平台，以促进和支持纵向队列研究，并提高对癌症幸存者的理解。
Background: Cancer survivors can face significant physical and psychosocial challenges; there is a need to identify and predict which survivors experience what sorts of difficulties. As highlighted in the UK National Cancer Survivorship Initiative, routine post-diagnostic collection of patient reported outcome measures (PROMs) is required; to be most informative, PROMs must be linked and analysed with patients' diagnostic and treatment information. We have designed and built a potentially cost-efficient UK-scalable electronic system for collecting PROMs via the internet, at regular post-diagnostic time-points, for linking these data with patients' clinical data in cancer registries, and for electronically managing the associated patient monitoring and communications; the electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system. This study aims to test the feasibility of the ePOCS system, by running it for 2 years in two Yorkshire NHS Trusts, and using the Northern and Yorkshire Cancer Registry and Information Service.Methods/Design: Non-metastatic breast, colorectal and prostate cancer patients (largest survivor groups), within 6 months post-diagnosis, will be recruited from hospitals in the Yorkshire Cancer Network. Participants will be asked to complete PROMS, assessing a range of health-related quality-of-life outcomes, at three time-points up to 15 months post-diagnosis, and subsequently to provide opinion on the ePOCS system via a feedback questionnaire. Feasibility will be examined primarily in terms of patient recruitment and retention rates, the representativeness of participating patients, the quantity and quality of collected PROMs data, patients' feedback, the success and reliability of the underpinning informatics, and the system running costs. If sufficient data are generated during system testing, these will be analysed to assess the health-related quality-of-life outcomes reported by patients, and to explore if and how they relate to disease, treatment and/or individual differences characteristics.Discussion: There is currently no system in the UK for collecting PROMs online and linking these with patients' clinical data in cancer registries. If feasible, ePOCS has potential to provide an affordable UK-scalable technical platform to facilitate and support longitudinal cohort research, and improve understanding of cancer survivors'