Bridges John Fp, Crossnohere Norah L, Schuster Anne L, Miller Judith A, Pastorini Carolyn, Aslakson Rebecca A
Department of Health Policy and Management, The Johns Hopkins Bloomberg School of Public Health, Baltimore, MD.
Department of Health, Behavior, and Society, The Johns Hopkins Bloomberg School of Public Health, Baltimore, MD.
Patient Prefer Adherence. 2018 Feb 8;12:241-249. doi: 10.2147/PPA.S150663. eCollection 2018.
Despite a movement toward patient-centered outcomes, best practices on how to gather and refine patients' perspectives on research endpoints are limited. Advanced care planning (ACP) is inherently patient centered and would benefit from patient prioritization of endpoints for ACP-related tools and studies.
This investigation sought to prioritize patient-centered endpoints for the content and evaluation of an ACP video being developed for patients undergoing major surgery. We also sought to highlight an approach using complementary engagement and research strategies to document priorities and preferences of patients and other stakeholders.
Endpoints identified from a previously published environmental scan were operationalized following rating by a caregiver co-investigator, refinement by a patient co-investigator, review by a stakeholder committee, and validation by patients and family members. Finalized endpoints were taken to a state fair where members of the public who indicated that they or a loved one had undergone major surgery prioritized their most relevant endpoints and provided comments.
Of the initial 50 ACP endpoints identified from the review, 12 endpoints were selected for public prioritization. At the state fair, 359 individuals prioritized the endpoints, the highest ranking of which was having a meaningful conversation with a physician before surgery (57%).
Using a novel combination of engagement and research techniques provided the opportunity to understand which endpoints were most important to patients and families and fostered framework development clarifying the differential contributions of engagement and research. Results from this study ultimately changed the content and evaluation of the ACP video.
尽管朝着以患者为中心的结果发展，但关于如何收集和完善患者对研究终点的看法的最佳实践却很有限。高级护理计划（ACP）本质上是以患者为中心的，并且会从患者对与ACP相关的工具和研究的终点进行优先排序中受益。
本调查旨在为正在为接受大手术的患者开发的ACP视频的内容和评估确定以患者为中心的终点的优先级。我们还试图强调一种使用互补参与和研究策略来记录患者及其他利益相关者的优先级和偏好的方法。
从先前发表的环境扫描中确定的终点，经过护理人员共同研究者的评级、患者共同研究者的细化、利益相关者委员会的审查以及患者和家庭成员的验证后得以实施。最终确定的终点被带到一个州博览会上，那些表示自己或亲人接受过大手术的公众对他们最相关的终点进行了优先排序并提供了意见。
从审查中确定的最初50个ACP终点中，选择了12个终点进行公众优先级排序。在州博览会上，359个人对这些终点进行了优先排序，其中排名最高的是在手术前与医生进行有意义的交谈（57%）。
使用参与和研究技术的新颖组合提供了机会，以了解哪些终点对患者和家庭最重要，并促进了框架的发展，明确了参与和研究的不同贡献。本研究的结果最终改变了ACP视频的内容和评估。
