Abstract: TH-PO896
Patient and Provider Discordant Perspectives on Patient Transplant Experiences
Session Information
- Transplantation: Donation and Access
November 02, 2023 | Location: Exhibit Hall, Pennsylvania Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Transplantation
- 2102 Transplantation: Clinical
Authors
- Hood, Dennis, Equa Solutions, Germantown, Maryland, United States
- Andracchio, Lauren, American Kidney Fund, Rockville, Maryland, United States
- Paris, Melanie, American Kidney Fund, Rockville, Maryland, United States
- Spigler, Michael, American Kidney Fund, Rockville, Maryland, United States
Background
While transplant is the optimal treatment for end stage kidney disease (ESKD), there is a kidney shortage. In 2022, over 4000 people died waiting for a transplant. Both patients and providers have unique vantage points of patient transplant challenges. To gain insight from both perspectives, the American Kidney Fund (AKF) conducted qualitative research with each group.
Methods
AKF hosted 2, 90-minute focus groups (FG) of 6 transplant patients/donors and 6, 60-minute in-depth interviews (IDI) with 4 renal specialists and 2 patients unable to attend FG. Sixteen IDI and 10 FG open-ended questions were asked to reveal participants’ unique perspectives on challenges accessing transplant, process awareness, helpful resources, and transplant information-sharing methods. IDI and FG were recorded, transcribed, and analyzed using a deductive approach via concept-driven coding in NVivo. Themes were indicated by frequency of mentions (FM).
Results
AKF identified 7 themes: challenges, empowerment, resources, post-transplant experiences, pre-transplant experiences, living donor, and educational material mechanics. Distinctions in patient and provider conversations were on patient challenges, living donor and post-transplant experiences. Provider discussions on patient challenges focused on “maintaining health” or difficulties maintaining waitlist eligibility, attending appointments, and taking medications (FM=24) while patient challenge discussions were on finding a donor (FM=11). For useful patient resources, providers (FM=8) and patients (FM=18) discussed “doctors, clinical team,” yet patients also valued “mentors, peers” (FM=15) and “support groups” (FM=10). Conversations on post-transplant patient experiences were limited, but providers emphasized the patients’ need to “maintain health” (FM=4) and prepare for post-transplant life (FM=4), while patients mentioned “recovery process” (FM=1).
Conclusion
Qualitative results reveal discordant focuses between patient and provider on patient transplant challenges, donor experiences, and post-transplant life. Given the limited sample, future research is needed to further understand what causes the differences in perspectives. This research would bring insight into patient barriers and ways to augment patient and provider education materials to bring a unified approach to transplant.