*Purpose: While graft and patient outcomes with belatacept have been relatively well documented, the decision to use belatacept for kidney transplant recipients rests in part on the patient experience with a monthly infusion. These details are poorly documented in the literature. This study describes the personal impact of using belatacept to facilitate shared and informed decision making regarding the choice of immunosuppression among transplant providers, transplant coordinators and patients.

*Methods: Adult kidney recipients at our center were screened on 11/9/18 and 1/18/19 and those who were receiving belatacept received this survey between 12/12/18 and 6/1/19.

*Results: 100 patients participated (74% response rate), with an average age of respondents of 55 years old (range 22 to 78); 60% were male. Participants received belatacept for a mean of 30 months. 78% rated their health as good, very good or excellent and 86% rated their quality of life as good, very good or excellent. Participants traveled an average of 40 minutes (range 5 to 180 minutes) and spent an average of 111 minutes at the infusion center to receive the infusion. 64% rated the infusions as either extremely or very convenient; 33% rated them as moderately or slightly convenient. 83% of respondents either were no longer working or did not have to take time off of work to receive their infusion. The day on which to receive the infusion was selected by 54% of the participants, and 55% chose the time of day to receive their belatacept within the administration due date window. 72% were able to get monthly labs drawn at the same time as the infusion. 52% reported successful IV placement on the first try, 33% in 2 attempts, and an additional 15% in 3 or more attempts. 22 respondents reported to be insulin dependent diabetics. Of those 22, 4 reported a higher insulin requirement, 5 reported a lower insulin requirement and 13 reported no change in their insulin requirement after starting the belatacept. Regarding the reason to start belatacept, 52% reported starting the belatacept because they were told it would improve their kidney function, 27% due to tremors, and 27% as part of a research study (could choose more than one answer). Overall, 89% reported being very or extremely satisfied with receiving belatacept.

*Conclusions: This study finds that participants are generally satisfied with their experience in receiving belatacept infusions. They report that the potential or actual benefits of belatacept justify possible drawbacks, such as time spent for travel and infusion, limited control over infusion planning, no decrease in insulin requirements and multiple IV attempts. While this study is limited to one institution and would benefit from replication, these findings begin to fill an important gap in current research.

« Back to 2020 American Transplant Congress