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Kidney Week

Abstract: SA-PO1089

Addressing Kidney Transplant Recipients' Psychological and Psychosocial Burdens Through a Digital Community

Session Information

Category: Transplantation

  • 2102 Transplantation: Clinical

Authors

  • Hehenberger, Karin, Columbia University Vagelos College of Physicians and Surgeons, New York, New York, United States
  • Slusser, Maiya, Patient Care America, Pompano Beach, Florida, United States
  • Haight, Jamie, Patient Care America, Pompano Beach, Florida, United States

Group or Team Name

  • Lyfebulb.
Background

Post-transplantation, kidney transplant recipients face significant psychological and psychosocial burdens, such as isolation, anxiety, and stress of long-term health management. These stressors are shown to negatively impact adherence, thus increasing the risk of hospitalization and organ rejection. To address this challenge, digital platforms may offer scalable, peer-driven solutions to support recipients’ well-being post-transplant.

Methods

We conducted a retrospective analysis of user behavior on TransplantLyfe.com, a digital peer support platform for the transplant community. Data was collected from two primary features on the platform: a moderated discussion forum and a virtual, bi-weekly support group series. Forum data was captured via Vanilla from 2020 to 2024 and analyzed by an internal data scientist. Support group data was captured in 2024 via Zoom for attendance metrics; discussion topics were reported by a certified peer mentor who moderated each session.

Results

With 1,900+ users registered on the platform, 65% identified as kidney transplant recipients. The forum was the most used feature with 81% of all user sessions. Community building and mental health were the two primary recurring themes, comprising 33% of discussions. The remaining 67% of topics expanded across themes such as medications, side effects & symptoms, diet & lifestyle, post-transplant care, and more.

Virtual support groups, which included 24 sessions and an average attendance of 17 per session, totaled 20,000+ participant minutes. 75% of discussions focused on mental health and 15% on community support. Micro themes included self-advocacy, coping with emotional challenges, and adapting to post-transplant challenges. Recipients reported how the support groups helped reduce feelings of isolation by finding solutions to rebuild their identity post-transplant.

Conclusion

Digital peer support platforms such as TransplantLyfe have the power to address critical psychological and psychosocial challenges for kidney transplant recipients by offering peer-based solutions at scale. Deep engagement in the discussion forum and support groups showcases the unmet need for peer support and connection. Further research is needed to assess the impact of these digital tools on quality of life and long-term outcomes.

Digital Object Identifier (DOI)