Abstract
Introduction: Shared decision-making centers around accurate patient understanding of risk-benefits associated with a therapy. This study evaluates (i) patient and caregiver estimated risks for LVAD complications and (ii) describes how patients and caregivers rationalize estimated risks. Methods: We conducted a qualitative study using semi-structured interviews with 18 LVAD recipients and 9 caregivers between 1/13/2023 - 6/4/2023. Interviews were transcribed and coded, with themes identified using rapid qualitative analysis. Results: Included patients had a median age (range) of 60.5 (28-83) years, 12 (67%) were men, 12 (67%) were White and 10 (56%) received their LVAD as destination therapy (DT). Participating caregivers included 8 (89%) women supporting 5 (56%) DT LVAD recipients. Using the Penn Columbia Risk Score, 22% of the participants were high risk, 33% moderate risk, and 44% were low risk for mortality. When asked about patient physician communication participants ranked their interactions highly. Of all LVAD risks, both patients and caregivers demonstrated good understanding of risks of stroke and heart failure hospitalization after LVAD (89% and 72% respectively). However, both patients and caregivers described poor understanding of risks of GI bleeding and LVAD associated infections (63% patients and 25% caregivers for GI bleeding and 55% patients and 37% caregivers for infection). We identified three themes explaining how patients and caregivers rationalized under-estimation of LVAD risks (i) lack of awareness (ii) survivor bias (iii) minimization. Exemplary quotes highlighting these themes are provided in the Table below. Conclusion: Our qualitative study highlights the poor understanding patients have with regards to LVAD complications. This highlights the need to improve LVAD recipient and caregiver education on associated risks.
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