UCLA

Many patients diagnosed with kidney failure and referred for kidney transplant do not proceed towards medical evaluation for transplant and are considered “Lost to Follow-Up.” The reasons patients do not pursue kidney transplant are not well understood by providers and kidney transplant centers. To expand and deepen understanding about the “Lost to Follow-Up” population, this study sought to explore the lived experiences of patients who are referred for renal transplant but do not initiate or complete transplant evaluation. The goal was to listen to their stories about living with life-threatening kidney disease, their perspectives about the referral process, and their considerations about renal failure treatments.Using the Narrative Inquiry method of qualitative research, the PI conducted semi-structured phone interviews with ten patients labeled “Lost to Follow-Up” by their kidney transplant center. Interviews were digitally recorded and immediately transcribed for analysis. Multi-level coding was performed and the themes that emerged included a metanarrative entitled “The Struggling Self” and four themes that appear to describe the “Lost to Follow-up” patient designation. The themes reveal that participants (1) wanted meaningful information, (2) experienced both internal and external barriers as they put off the kidney transplant referral, (3) needed improved provider communication, and (4) needed help to shoulder the burden of renal failure and subsequent treatment. The study findings revealed that patients do not see themselves as “Lost to Follow-Up” but rather as “nowhere”, “prisoners”, “trapped”, “stuck”, “scarred”, “on-hold”, “not worth it”, “wrecked”, “complicated”, “home alone” and “pretty happy”. The study findings reveal opportunities for provider actions that align with the four thematic categories including (1) increase upstream screening and early, meaningful patient education and engagement regarding kidney health; (2) enhance provider communication training; (3) perform ongoing patient assessment for internal and external barriers to follow-up and (4) align care with patient goals and consider the utilization of conservative care as a treatment option in kidney disease.