Abstract
Background
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.
Objective
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.
Materials and methods
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.
Results
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%).
Conclusion
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.
Acknowledgments
We would like to thank all patients and caregivers who participated in the varying stages of this project, as well as the stakeholder team which helped to refine endpoints. Thanks to Thomas Lynch for his contributions to this project. We are very grateful to our anonymous peer reviewers for providing thoughtful insight that helped us to strengthen the paper. This paper is dedicated to Carolyn Pastorini.
Research reported in this article was funded through a Patient-Centered Outcomes Research Institute (PCORI) award (CD-12-11-4362). The statements in this article are solely the responsibility of the authors and do not necessarily represent the views of the PCORI, its board of governors, or methodology committee.
Disclosure
JFPB acknowledges support from the PCORI Methods Program Award (ME-1303-5946). The authors report no other conflicts of interest in this work.