Recommendations for Systematizing Transplant Education Within a Care Delivery System for Patients With Chronic Kidney Disease Stages 3 to 5

Abstract

CONTEXT: Early tailored transplant education could help patients make informed transplant choices. OBJECTIVE: We interviewed 40 patients with chronic kidney disease (CKD) stages 3 to 5, 13 support persons, and 10 providers at Kaiser Permanente Southern California to understand: (1) barriers to transplant education and (2) transplant educational preferences and recommendations based on CKD stage and primary language spoken. DESIGN: A grounded theory analysis identified central themes related to transplant education barriers, preferences, and recommendations. RESULTS: Barriers included confusion about diagnosis and when transplant may be necessary, concerns about transplant risks, families' lack of transplant knowledge, financial burdens, transportation and scheduling, and the emotional overload of chronic illness. Hispanic and Spanish-speaking participants reported difficulty in understanding transplant education and medical mistrust. Recommendations included providing general education, earlier introduction to transplant, wait-listing information, transplant education for support persons, living donation education for patients and potential donors, opportunities to meet living donors and kidney recipients, information on the benefits of transplant, recovery, and available financial resources, flexible class scheduling, online and print resources, and more provider follow-up. Spanish-speaking and Hispanic participants recommended using bilingual educators, print, video, and online resources in Spanish, and culturally responsive education. Patients with CKD stages 3 to 4 wanted information on slowing disease progression and avoiding transplant. CONCLUSION: Increasing access to culturally responsive transplant education in multiple languages, pairing appropriate content to the disease stage, and increasing system-wide follow-up as the disease progresses might help patients make more informed choices about transplant.