Health Services and Information Management, East Carolina University, 600 Moye Blvd. (Mail Stop 668), Greenville, NC, 27834, USA.
Department of Health Informatics and Administration, Social Media and Health Research & Training Lab, College of Health Sciences, University of Wisconsin - Milwaukee, Northwest Quadrant Building B, Rm #6410, 2025 East Newport Avenue, Milwaukee, WI, 53201-0413, USA.
BMC Med Inform Decis Mak. 2020 Mar 23;20(1):59. doi: 10.1186/s12911-020-1073-8.
Although cancer survivorship care plans have been in use for several years, they have been shown to not be effective in meeting the long-term needs of cancer survivors, in addition being generic and passive in nature. Interactive survivorship care plans in the form of a personal decision support aid could provide an opportunity to not only engage survivors in their health care, but also capture meaningful treatment-related outcomes to use as a rich data source as the basis for making informed decisions. The objective of this research is to formulate an evidence-based model framework for implementing breast cancer survivorship guidelines via an online breast cancer survivorship care plan (SCP).
The study was completed in three steps. In the first step, or the requirements gathering phase, we conducted personal interviews of breast cancer survivors to determine their use of the survivorship care plan (SCP) and related needs to determine core SCP functions and formulate an implementation framework for an online SCP. In the second step, we used the framework as a guide to design and develop the online SCP tool. Finally, in the third step, we conducted preliminary testing to determine the feasibility of the developed tool among online users.
Fifteen breast cancer survivors were consulted, who reported several issues from their use of the traditional paper-based SCP. Four themes were identified that represent the SCP's core desired functions. Eight features were matched to implement these core functions. Using a personal decision approach, an online SCP tool called ACESO that incorporates these features and functions was developed. Preliminary feasibility testing yielded overall positive responses from breast cancer survivors (n = 51).
Our study demonstrated that survivors face challenges from their use of a traditional paper-based SCP. The online SCP we developed is technically feasible and has the potential to effectively engage breast cancer survivors in self-management and shared decision-making with their clinicians and caregivers. Further testing is required to assess its usability and long-term impact.
尽管癌症生存者护理计划已经使用了几年，但它们在满足癌症生存者的长期需求方面并未显示出有效性，而且性质上是通用的和被动的。以个人决策支持辅助工具形式的交互式生存者护理计划为不仅使生存者参与其医疗保健提供了机会，而且还可以获取有意义的治疗相关结果，作为做出明智决策的丰富数据源。本研究的目的是制定一个基于证据的模型框架，通过在线乳腺癌生存者护理计划（SCP）实施乳腺癌生存者指南。
该研究分三步完成。在第一步，即需求收集阶段，我们对乳腺癌生存者进行了个人访谈，以确定他们对生存者护理计划（SCP）的使用情况和相关需求，以确定核心 SCP 功能并制定在线 SCP 的实施框架。在第二步，我们使用该框架作为指南来设计和开发在线 SCP 工具。最后，在第三步，我们进行了初步测试，以确定在线用户对开发工具的可行性。
咨询了 15 名乳腺癌生存者，他们报告了传统纸质 SCP 使用中的几个问题。确定了四个代表 SCP 核心期望功能的主题。为实施这些核心功能匹配了八个功能。采用个人决策方法，开发了一个名为 ACESO 的在线 SCP 工具，该工具结合了这些功能和功能。初步可行性测试得出了乳腺癌生存者（n=51）的总体积极反应。
我们的研究表明，生存者在使用传统纸质 SCP 时面临挑战。我们开发的在线 SCP 在技术上是可行的，并且有可能有效地使乳腺癌生存者参与自我管理和与他们的临床医生和护理人员共同决策。需要进一步测试来评估其可用性和长期影响。
