Henton Michelle, Gaglio Bridget, Cynkin Laurie, Feuer Eric J, Rabin Borsika A
Clinical Effectiveness and Decision Science, Patient-Centered Outcomes Research Institute, Washington, DC, United States.
Office of Advocacy Relations, Office of the Director, National Cancer Institute, Bethesda, MD, United States.
JMIR Cancer. 2017 Jul 20;3(2):e9. doi: 10.2196/cancer.7120.
Population datasets and the Internet are playing an ever-growing role in the way cancer information is made available to providers, patients, and their caregivers. The Surveillance, Epidemiology, and End Results Cancer Survival Calculator (SEER*CSC) is a Web-based cancer prognostic tool that uses SEER data, a large population dataset, to provide physicians with highly valid, evidence-based prognostic estimates for increasing shared decision-making and improving patient-provider communication of complex health information.
The aim of this study was to develop, test, and implement SEER*CSC.
An iterative approach was used to develop the SEERCSC. Based on input from cancer patient advocacy groups and physicians, an initial version of the tool was developed. Next, providers from 4 health care delivery systems were recruited to do formal usability testing of SEERCSC. A revised version of SEER*CSC was then implemented in two health care delivery sites using a real-world clinical implementation approach, and usage data were collected. Post-implementation follow-up interviews were conducted with site champions. Finally, patients from two cancer advocacy groups participated in usability testing.
Overall feedback of SEER*CSC from both providers and patients was positive, with providers noting that the tool was professional and reliable, and patients finding it to be informational and helpful to use when discussing their diagnosis with their provider. However, use during the small-scale implementation was low. Reasons for low usage included time to enter data, not having treatment options in the tool, and the tool not being incorporated into the electronic health record (EHR). Patients found the language in its current version to be too complex.
The implementation and usability results showed that participants were enthusiastic about the use and features of SEERCSC, but sustained implementation in a real-world clinical setting faced significant challenges. As a result of these findings, SEERCSC is being redesigned with more accessible language for a public facing release. Meta-tools, which put different tools in context of each other, are needed to assist in understanding the strengths and limitations of various tools and their place in the clinical decision-making pathway. The continued development and eventual release of prognostic tools should include feedback from multidisciplinary health care teams, various stakeholder groups, patients, and caregivers.
人口数据集和互联网在向医疗服务提供者、患者及其护理人员提供癌症信息的方式中发挥着越来越重要的作用。监测、流行病学和最终结果癌症生存计算器(SEER*CSC)是一种基于网络的癌症预后工具,它使用大型人口数据集SEER数据,为医生提供高度有效、基于证据的预后估计,以增加共同决策并改善医患之间关于复杂健康信息的沟通。
本研究的目的是开发、测试和实施SEER*CSC。
采用迭代方法开发SEERCSC。根据癌症患者权益倡导组织和医生的意见,开发了该工具的初始版本。接下来,招募了来自4个医疗服务提供系统的医疗服务提供者对SEERCSC进行正式的可用性测试。然后,使用实际临床实施方法在两个医疗服务提供地点实施SEER*CSC的修订版,并收集使用数据。对站点负责人进行了实施后随访访谈。最后,来自两个癌症权益倡导组织的患者参与了可用性测试。
医疗服务提供者和患者对SEER*CSC的总体反馈是积极的,医疗服务提供者指出该工具专业且可靠,患者发现该工具在与医疗服务提供者讨论诊断时提供了信息且很有帮助。然而,小规模实施期间的使用率较低。使用率低的原因包括输入数据的时间、工具中没有治疗选项以及该工具未被纳入电子健康记录(EHR)。患者发现其当前版本的语言过于复杂。
实施和可用性结果表明,参与者对SEERCSC的使用和功能充满热情,但在实际临床环境中的持续实施面临重大挑战。基于这些发现,SEERCSC正在重新设计,以更通俗易懂的语言面向公众发布。需要元工具,即将不同工具相互关联起来,以帮助理解各种工具的优势和局限性及其在临床决策路径中的位置。预后工具的持续开发和最终发布应包括多学科医疗团队、各种利益相关者群体、患者及其护理人员的反馈。