Nonadherence and Patient Empowerment on the Path to Kidney Transplant

Background: Compared to dialysis, kidney transplant conveys quality of life and survival benefits, yet only 15% of incident patients are waitlisted or receive a kidney transplant within 1 year of dialysis start. KDIGO guidelines recommend that patients with past non-adherence be considered for kidney transplant, but many kidney care professionals (KCPs) consider transplant to be contraindicated for these patients, potentially contributing to low waitlisting rates among eligible patients. Patients’ understanding of non-adherence and its perceived impact on their access to kidney transplant is not well understood. Methods: We conducted 20 in-depth interviews during 2024 with hemodialysis patients in the US. A semi-structured interview guide was used to explore what non-adherence means to patients in the context of kidney transplant. We purposively recruited patients by age, race, SES, gender, and transplant status to achieve a diverse sample. Interviews were conducted via phone and Zoom and were recorded and transcribed verbatim. We used MAXQDA software to manage data. A grounded theory approach was used to collect and analyze data. Results: Preliminary results indicate that patients experience tension between being empowered to understand and manage their care and meeting their KCPs’ expectations for adherence. Patients described non-adherence as ambiguously defined by KCPs, encompassing a range of behaviors from occasionally missing dialysis treatments to being considered a “difficult patient”. Some patients described being labeled “non-compliant” by KCPs when attempting to advocate for their care (e.g., asking questions about recommended testing or expressing concerns about the iatrogenic or social consequences of treatment), resulting in their KCPs denying them referral or waitlisting. Women and Black patients, more often than men and white patients, reported that their efforts to actively engage in their health care were perceived as insubordinate (“If somebody doesn’t like what you’re saying, they can label you as non-compliant. It’s such a scary term for patients.") Conclusion: Patients consider non-adherence an ambiguously defined and "scary" label that can interfere with their access to kidney transplant. Evidence-based protocols for assessing adherence are needed to reduce potential bias in eligibility decisions when KCPs perceive patients as “non-compliant”.