Lived Experiences of Patients With Sickle Cell Disease and Kidney Failure: Insights From a Qualitative Study.

Abstract

Patients with sickle cell disease (SCD) experience multisystem complications, with sickle cell nephropathy being a major contributor to chronic kidney disease and kidney failure (KF). Despite the high burden of SCD-associated KF, little is known about how patients experience and cope with this unique multimorbidity. We conducted a dual-center qualitative study using face-to-face semistructured interviews, recruited 10 patients, and performed thematic analysis. Interviews were conducted in Arabic, transcribed verbatim, and translated into English by bilingual nephrologists. Data were coded iteratively using inductive coding. We identified 4 themes that describe patients' lived experiences with SCD and KF: (1) adjustment to KF; (2) pain, fatigue, and crisis management; (3) knowledge, education, and awareness; and (4) fragmented care and systemic barriers. Religious faith, family support, and resilience emerged as important coping mechanisms, while patients reported feeling unprepared for dialysis and inadequately informed about modality choices. These findings highlight the need for multidisciplinary, patient-centered services, structured education on dialysis options, and improved interprofessional coordination, providing insights to inform future interventions.