Web-based Patient-Reported Outcomes (PRO) System for Breast Cancer Survivors

描述（由申请人提供）： 此应用程序解决了广泛的挑战领域（06）使能技术和特定的挑战主题，06-CA-101：增强临床研究或医疗保健服务中的电子患者报告结果评估。职务名称：“基于网络的乳腺癌幸存者患者报告结果（PRO）系统”围绕乳腺癌幸存者的持续护理、支持和监测的问题在医学研究所2006年出版物“从癌症患者到癌症幸存者：迷失在过渡中”中进行了描述。“在随访期间，通常不会主动监测幸存者症状（例如那些表明可能复发或治疗相关副作用的症状）和生活质量（QOL）。与此同时，大多数患者的就诊频率远远高于ASCO推荐的幸存者随访访视，导致临床环境中的容量问题。虽然这些问题被广泛认识到，但缺乏时间和资源来建立结构良好的生存计划，以及缺乏足够的工具来进行沟通，教育和监测，这阻止了癌症中心以积极主动的系统方式解决这些问题。本提案的成功支柱将基于利用本项目中提议的同一协作团队完成的先前工作：“2007年，加州大学弗朗西斯科分校（UCSF）和达特茅斯-希区柯克医学中心（D-H）在SBIR的资助下与动态临床系统（DCS）合作，（NCI主题212）为新的乳腺患者开发一个患者报告结果（PRO）系统，即综合调查系统（R）（ISS）;“2008年，加州大学旧金山分校和达特茅斯启动了生存计划，为患者提供从癌症治疗环境过渡所需的教育、工具和支持; 2009年，加州大学旧金山分校启动了一项随机对照试验（RCT），将传统的诊所内随访护理与新的家庭随访跟踪进行比较，乳腺癌幸存者填写问卷，由临床医生使用ISS进行远程审查。该项目的具体目标是在以前的工作和势头的基础上：1。为乳腺癌幸存者设计患者报告结局（PRO）系统功能和流程，并开发高优先级系统功能，包括：（A）通过网络收集PRO数据的家庭生存流程和系统;（B）医生之间的护理协调;（C）自动转诊给专家（例如，营养师，戒烟，锻炼计划，同伴支持等）; (D)症状监测和管理;（E）基于患者对问卷的回答，定制关于健康和复发预防的生存教育; 2.使用横截面和纵向指标评估实施的可行性，包括：（A）幸存者完成率和可接受性（按变量分类，如教育、年龄、健康状况、生存期、在家与诊所内给药）;（B）临床医生满意度;（C）实施前与实施后的转诊率;（D）将患者报告的数据与辅助因素如QOL、药物滥用、烟草使用、精神健康状况的先前临床文件进行比较; 3.为准备实施PRO系统和流程的其他癌症中心制作白色文件，为癌症患者提供监测、护理和支持，包括：项目规划、组织要求、互操作性要求（与医院系统或个人健康记录共享数据）、实施障碍和优化利益相关者采用的机会。组建的团队代表了由Dynamic Clinical Systems（DCS）领导的D-H和UCSF乳腺中心之间非常成功的合作的延续。这支经验丰富的团队投入了大量时间，分别追求患者报告的结果倡议，之后已经合作了三年多。除了代表这两个机构之间的农村和城市患者群体外，该项目的顾问还将代表社区癌症患者和提供者的观点。虽然没有被任命为该项目的顾问，但该团队将征求同事的意见，包括初级保健医生和癌症护理提供者，为服务不足的患者群体提供服务。鉴于该系统在新的乳腺癌患者中的成功实施，该团队有信心（1）设计和开发的增强功能将提高乳腺癌幸存者的沟通，护理和支持的质量和效率;（2）研究结果将鼓励并帮助为其他PRO启用的生存计划的实施铺平道路。此应用程序解决了广泛的挑战领域（06）使能技术和特定的挑战主题，06-CA-101：增强临床研究或医疗保健服务中的电子患者报告结果评估。职务名称：“基于网络的乳腺癌幸存者患者报告结果（PRO）系统”项目叙述该项目的目标是使癌症中心能够使用基于网络的工具和流程为其乳腺癌幸存者提供持续的护理，监测和支持。在乳腺癌患者完成治疗后，他们将定期通过电子邮件发送一个网站链接，以完成调查问卷，向他们的癌症中心传达他们的生活质量（身体，功能，心理健康状况），症状和健康习惯。完成这些问卷调查将立即为幸存者提供针对其回答的教育，并将通过电子邮件向癌症中心和适当的专家发送总结报告，强调随着时间的推移症状趋势和潜在的随访领域。

DESCRIPTION (provided by applicant): This application addresses broad Challenge Area (06) Enabling Technologies and specific Challenge Topic, 06-CA-101: Enhancing Electronic Patient-Reported Outcomes Assessment in Clinical Research or Healthcare Delivery. Title: "Web-based Patient-Reported Outcomes (PRO) System for Breast Cancer Survivors" The issues surrounding the ongoing care, support, and surveillance of breast cancer survivors are described in the Institute of Medicine 2006 publication "From Cancer Patient to Cancer Survivor: Lost in Transition." Proactive monitoring of survivor symptoms (such as those symptoms indicating possible recurrence or addressable treatment-related side effects) and quality of life (QOL) are not commonly addressed during follow-up visits. At the same time, most patients are seen far more frequently than ASCO recommends for survivor follow-up visits, resulting in capacity issues in the clinical setting. While such issues are widely recognized, lack of time and resources to build well-structured survivorship programs and insufficient tools to enable communication, education, and surveillance prevent cancer centers from addressing these issues in a proactive, systemic way. The pillars of success for this proposal will be based on leveraging previous work completed by the same collaborative team proposed in this project: " In 2007, the University of California San Francisco (UCSF) and Dartmouth-Hitchcock Medical Center (D-H) collaborated with Dynamic Clinical Systems (DCS) under SBIR funding (NCI Topic 212) to develop a patient-reported outcomes (PRO) system, Integrated Survey System(R) (ISS), for new breast patients; " In 2008, UCSF and Dartmouth launched survivorship programs to provide patients with the education, tools, and support needed to transition from cancer treatment settings; " In 2009, UCSF launched a randomized controlled trial (RCT) to compare traditional in-clinic follow-up care with a new at-home follow-up track whereby breast cancer survivors complete questionnaires to be reviewed by a clinician remotely using ISS. The specific aims of this project are to build on this previous work and momentum to: 1. Design patient-reported outcomes (PRO) system functionality and processes for breast cancer survivors, and develop high-priority system features, including: (A) at-home survivorship process and system to collect PRO data via the Web; (B) care coordination among physicians; (C) automated referrals to specialists (e.g., dietician, smoking cessation, exercise program, peer support, etc.); (D) symptom surveillance and management; (E) tailored survivorship education about wellness and recurrence prevention based on patient responses to questionnaires; 2. Assess feasibility of implementation using cross-sectional and longitudinal metrics including: (A) survivor completion rates and acceptability (categorized by variables such as education, age, health status, survivorship stage, at-home vs. in-clinic administration); (B) clinician satisfaction; (C) pre- vs. post- implementation referral rates; (D) comparison of patient-reported data to previous clinical documentation of ancillary factors such as QOL, substance abuse, tobacco use, mental health status; 3. Produce white paper for other cancer centers preparing to implement PRO systems and processes to provide surveillance, care, and support for cancer patients, including: project planning, organization requirements, interoperability requirements (for sharing data with hospital systems or personal health records), implementation barriers and opportunities to optimize stakeholder adoption. The team assembled represents the continuation of a highly successful collaboration between D-H and UCSF Breast Centers led by Dynamic Clinical Systems (DCS). This deeply devoted, experienced team has been working together for over three years after significant time invested separately pursuing patient-reported outcomes initiatives. In addition to representing rural and urban patient populations between these two institutions, the consultants on this project will represent the perspectives of community-based cancer patients and providers. While not named as consultants to this project, the team will solicit input from colleagues, including primary care physicians and cancer care providers for underserved patient populations. Given the successful implementation of this system for new breast cancer patients, this team is confident that (1) the enhancements to be designed and developed will improve the quality and efficiency of communication, care, and support for breast cancer survivors; (2) the study findings will encourage and help pave the way for other PRO-enabled survivorship program implementations. This application addresses broad Challenge Area (06) Enabling Technologies and specific Challenge Topic, 06-CA-101: Enhancing Electronic Patient-Reported Outcomes Assessment in Clinical Research or Healthcare Delivery. Title: "Web-based Patient-Reported Outcomes (PRO) System for Breast Cancer Survivors" Project Narrative The goal of this project is to enable cancer centers to provide ongoing care, surveillance, and support for their breast cancer survivors using Web-based tools and processes. After breast cancer patients have completed treatment, they will be periodically emailed a website link to complete questionnaires to communicate their quality of life (physical, functional, mental health status), symptoms, and health habits to their cancer centers. Completion of these questionnaires will immediately provide the survivor with education tailored to her responses and will email summary reports to the cancer center and appropriate specialists, highlighting symptom trends over time and potential areas for follow-up.