Center for Medical Ethics and Health Policy Staff Publications
Publication Date
5-1-2024
Journal
Patient Education and Counseling
DOI
10.1016/j.pec.2024.108157
PMID
38290171
PMCID
PMC12143230
PubMedCentral® Posted Date
6-6-2025
PubMedCentral® Full Text Version
Post-print
Published Open-Access
yes
Keywords
Humans, Decision Making, Heart-Assist Devices, Patient Education as Topic, Physicians, Attitude, Personalized risk estimates, Clinical decision making, Shared decision making, Patient engagement
Abstract
Background: Personalized risk (PR) estimates may enhance clinical decision making and risk communication by providing individualized estimates of patient outcomes. We explored stakeholder attitudes toward the utility, acceptability, usefulness and best-practices for integrating PR estimates into patient education and decision making about Left Ventricular Assist Device (LVAD).
Methods and results: As part of a 5-year multi-institutional AHRQ project, we conducted 40 interviews with stakeholders (physicians, nurse coordinators, patients, and caregivers), analyzed using Thematic Content Analysis. All stakeholder groups voiced positive views towards integrating PR in decision making. Patients, caregivers and coordinators emphasized that PR can help to better understand a patient's condition and risks, prepare mentally and logistically for likely outcomes, and meaningfully engage in decision making. Physicians felt it can improve their decision making by enhancing insight into outcomes, enhance tailored pre-emptive care, increase confidence in decisions, and reduce bias and subjectivity. All stakeholder groups also raised concerns about accuracy, representativeness and relevance of algorithms; predictive uncertainty; utility in relation to physician's expertise; potential negative reactions among patients; and overreliance.
Conclusion: Stakeholders are optimistic about integrating PR into clinical decision making, but acceptability depends on prospectively demonstrating accuracy, relevance and evidence that benefits of PR outweigh potential negative impacts on decision making quality.