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[Preprint]. 2024 Dec 30:2024.12.29.24319749. [Version 1] doi: 10.1101/2024.12.29.24319749

Patient Adapted Paternalism for Endomyocardial Biopsy Policy Changes in Heart Transplant Patients: A Mixed-Methods Study

Hyoungmin Kim, Vincenzo Cusi, Melissa McLenon, Rebecca Fielding-Miller, Jose Benjamin Cruz Rodriguez, Jennifer Chak, Marcus Anthony Urey, Paul J Kim
PMCID: PMC11722496  PMID: 39802762

Abstract

Endomyocardial biopsies (EMB) are invasive procedures performed in heart transplant (HTx) patients for surveillance of acute rejection. However, patient preferences for replacing EMBs with noninvasive assays in the context of potential institutional policy changes are unknown. A mixed-methods design was used with 28 semi-structured patient interviews and 123 self-administered online survey questionnaires in English and Spanish between January to June 2023. Additionally, we performed semi-structured interviews with 18 HTx team members. Three dominant themes were identified: alleviating patient anxiety and distress, consistent patient-provider communication, and strong interpersonal trust with the HTx team. We found that strong interpersonal trust with the HTx team by the patients was more highly prioritized than their own opinions on whether to replace EMBs with noninvasive assays. Thus, HTx patients often considered surveillance EMBs important to their care (93%), based on the recommendations provided by their HTx team. HTx faculty physicians stated that more multicenter trials are needed prior to replacing EMBs with noninvasive assays. In conclusion, patients identified strong interpersonal trust with HTx team members to justify patient adapted paternalism, where the provider decides in accordance with the patient’s situation, as their preferred shared decision-making paradigm when considering institutional policy on surveillance EMBs.

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