How are Patients with Advanced Heart Failure Informed about Living with an LVAD?

Abstract

<h3>Purpose</h3> Decision aids have become a powerful tool in left-ventricular assist device (LVAD) therapy for patients with advanced heart failure. Despite the vast availability of decision aids, a paucity of research exists regarding the nature of the information that patients receive about living with the LVAD. This study describes the extent of the knowledge that patients should possess before making decisions to receive an implantable LVAD. <h3>Methods</h3> We employed a qualitative description method using the data generated by two open-ended questions on shared decision-making and lifestyle from an online survey (n=125). Of the 125 LVAD patients, 116 provided with at least one response for the two-item question appended in the parent study. Content analysis included the assessment of word repetitions, metaphors, and other thematic phenomena. Most participants were male (66.4%), caucasian (75%), married (70.7%), bridge-to-transplant (70.7%), and HeartMate II (86.2%) patients. <h3>Results</h3> Four overarching themes emerged from the analyses: ‘choosing life or death,' ‘forfeiting a normal lifestyle,' ‘feeling insignificant,' and ‘knowing what to expect.' Notable sub-themes that emerged included the following: ‘powerlessness,' ‘gratitude for life,' ‘unknown complications,' ‘physical restraints,' ‘caregiver dependence,' ‘manipulation,' ‘false expectations,' ‘self-guided care,' ‘decision aids,' ‘well-informed,' ‘support system.' <h3>Conclusion</h3> We report a qualitative study featuring the largest sample size of its kind to date. Overall, patients were grateful for the life-saving nature of the LVAD, yet complications, along with poor support from the LVAD team, led some to feel unprepared for what was to come. Our study reinforces the need for decision aids and open communication regarding the lifestyle changes associated with LVAD therapy prior to implantation. The assistance of the care team is critical to ensuring patients make informed decisions and feel well-supported on these devices.