Patient Adapted Paternalism for Endomyocardial Biopsy Policy Changes in Heart Transplantation: A Mixed-Methods Study
Description
Endomyocardial biopsies (EMB) are invasive procedures performed in heart transplant (HTx) patients for surveillance of acute rejection. However, patient preferences for replacing EMBs with novel noninvasive assays, such as donor-derived cell-free DNA (dd-cfDNA), are unknown. A mixed-methods design was used with 28 semi-structured patient interviews and 119 self-administered online survey questionnaires in English and Spanish between January to June 2023. Additionally, we performed semi-structured interviews with 18 HTx providers. Three dominant themes were identified: alleviating patient anxiety and distress, consistent patient-provider communication, and strong interpersonal trust with HTx providers. We found that strong interpersonal trust with HTx providers 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 providers. HTx physician participants stated that more clinical trials were needed prior to replacing surveillance EMBs with novel noninvasive assays. In conclusion, patients identified strong interpersonal trust with HTx providers 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.