Kristin Kostick-Quenet, Rita Dexter, Jared N Smith, Meghan E Hurley, Joanna Smolenski, Andrew Civitello, Lola Xie, Nir Uriel, Pavan Bhat, Michael Givertz, Mauricio Velez, Robert Volk, Mahwash Kassi, Mandeep Mehra, Jerry Estep, Jennifer Blumenthal-Barby
Despite limited numerical recall, most patients grasped the essential implications of their PSEs. Findings underscore the importance of embedding personalized prognostic communication within comprehensive patient education frameworks that address both cognitive and emotional responses. Future research should develop strategies to optimize risk communication and support informed, values-aligned decision-making in preference-sensitive interventions.
BACKGROUND: Personalized prognostic communication - delivering individualized survival estimates to patients - is increasingly integrated into clinical decision support, yet its effects on patient understanding, recall, and decision-making remains poorly understood. This cross-sectional observational study examines how patients receiving personalized survival estimates (PSEs) during education for Left Ventricular Assist Device (LVAD) therapy understand and act on this information.
METHODS: As part of a 5-year, multi-site study, we conducted structured interviews with 24 patients with advanced heart failure who received PSEs via the HeartMate 3 Risk Score (HM3RS) during their LVAD education session. Interviews assessed recall accuracy, gist understanding, perceived utility, decisional impact, and emotional responses.
RESULTS: Fewer than one-third of patients accurately recalled their numerical survival estimates, yet 79% demonstrated high gist understanding - retaining key survival benefit messages. PSEs influenced decision direction in 14 of 24 participants (58%) and increased decisional clarity in 12 of 24 (50%). However, 21% experienced distress, particularly when estimates were lower than expected.
CONCLUSIONS: Despite limited numerical recall, most patients grasped the essential implications of their PSEs. Findings underscore the importance of embedding personalized prognostic communication within comprehensive patient education frameworks that address both cognitive and emotional responses. Future research should develop strategies to optimize risk communication and support informed, values-aligned decision-making in preference-sensitive interventions.