THE USE OF PATIENT NARRATIVES IN A DECISION AID FOR LEFT VENTRICULAR ASSIST DEVICE PLACEMENT FOR HEART FAILURE: AN APPLICATION OF PRE-EXISTING GUIDELINES

Purpose: Recent qualitative studies have elucidated the informational and decisional needs of candidates considering Left Ventricular Assist Device (LVAD) placement. In one study, 31 out of 45 LVAD candidates (n=15), patients (n=15), and caregivers (n=15) reported the need to hear from other LVAD patients and caregivers during their decision-making process. While the introduction of current or former LVAD patients and caregivers to candidates and their caregivers may be unstandardized, the use of patient narratives in decision aids may provide an accessible alternative, as they present patients with a range of viable experiences that can enhance their ability to make informed decisions. The usability and acceptability of narratives in LVAD-related decision aids remains untested.  

Methods: Sixty qualitative interviews were conducted with LVAD candidates (n=15), patients (n=15), decliners (n=15), and caregivers (n=15), and analyzed to identify quotes linked to common needs and themes related to decision-making. Three other LVAD patients ranked the quotes within each theme based on the quote’s ability to model quality decisional processes and experiences. Patients and caregivers whose quotes were selected were contacted for follow-up videotaped interviews by the research team (n=6). The content and format of these video and text data were used as extended narratives and tested for usability and acceptability among a sample of LVAD patients (n=10), candidates (n=10), and clinicians (n=13).

Results: Narratives were used to supplement key information and decisional needs and to alleviate misconceptions about receiving or declining the device. Preliminary testing of our decision aid shows 20 (100%) of patients/candidates believe the decision aid to cover both positive and negative aspects of LVAD treatment, and 19 of 20 (95%) rated the patient stories as relatable and as either excellent or good in overall content. Furthermore, 100% of patients said they would recommend this decision aid to other people considering treatment options for heart failure. Likewise, 12 of 13 (92%) LVAD clinicians rated the patient stories as either excellent or good in overall content.

Conclusions: Our results indicate that the use of narratives in LVAD-related decision aids is evaluated as useful and acceptable by patients undergoing decisions about LVAD implantation. This is an important first step in testing the impact of including patient and caregiver narratives in tools designed to foster informed, unbiased, and values-based decision-making.