Patients' Experiences Around Shared Decision Making for Left Ventricular Assist Devices: Results from I-DECIDE-LVAD.

A pamphlet and video decision aid (DA) developed for patients and families considering a left ventricular assist device (LVAD) was previously shown to be effective in improving decision quality. Subsequently, the DA was disseminated to LVAD programs across the country as part of the I-DECIDE-LVAD project. A patient survey was performed to understand patients' experiences in shared decision making and in using the DA. Twenty programs that reported using the I-DECIDE-LVAD DA were selected to broadly represent various institutional types, program sizes, and geographic regions across the United States. Each site was asked to distribute a survey to up to 30 patients who had recently been evaluated for LVAD. The survey contained questions related to patients' decision experiences including a validated 4-item decision process measure (scored 0-4) and the 3-item CollaboRATE measure (scored 0-9); higher scores indicate higher-quality shared decision making for both measures. Additionally, the survey asked if and how the patient used the DA, and the validated Acceptability Questionnaire about the DA. Sixteen programs distributed 439 surveys and received 205 responses (response rate 46.7%). On the decision process measure, patients scored a mean of 2.8 out of 4 (range 0-4). On the CollaboRATE measure, patients scored a mean of 8.5 out of 9 (range 3.7 - 9.0). A total of 63.5% of respondents reported receiving the I-DECIDE DA pamphlet and 39.5% received the video. The majority (58.5%) of patients received the DA from an LVAD coordinator and most commonly (39.5%) over two weeks before their implant. Of those that received it, 47.5% spent more than 15 minutes with the pamphlet and 84.9% watched the entire video. Additionally, 94% reviewed the DA with someone, most commonly a wife (29%) or daughter (14%). The content of the DA was rated as highly acceptable, including that it was the right amount of information (66.4%), easy to understand (52.8%), and helpful in the decision-making process (83.6%); respondents also reported that the DA was either completely balanced (56.4%) or slanted towards getting an LVAD (23.5%). Patients who were evaluate for LVAD reported high-quality shared decision making. The majority of patients remember receiving the LVAD DA. How they used the DA in terms of when they received it and with whom they watched it varied. [ABSTRACT FROM AUTHOR]