“I Wish Someone Had Told Me That Could Happen”: A Thematic Analysis of Patients’ Unexpected Experiences With End-Stage Kidney Disease Treatment

BACKGROUND: Preparedness regarding prognosis and treatment options enables patients to cope with uncertainties, make value-based treatment decisions, and set treatment goals. Yet, little is known about the expectedness of end-stage kidney disease (ESKD) patients’ treatment experiences beyond their desire for better treatment education. OBJECTIVE: To describe unexpected adverse treatment experiences among ESKD patients. METHOD: The authors conducted 7 focus groups with 55 dialysis patients and living-donor kidney transplantation recipients receiving medical care in Baltimore, Maryland. Data were analyzed thematically. Themes present in different treatment groups were highlighted to provide insight into common experiences. RESULTS: The authors identified 5 themes: (1) psychological reactions, (2) constrained freedom of choice, (3) treatment delivery and logistics, (4) morbidity, and (5) finances. CONCLUSION: Patients were unprepared for nonclinical, logistical, and clinical aspects of ESKD treatment. The need for providers’ use of tailored preparatory techniques and the development of pretreatment interventions to help patients know what to expect from and feel psychologically prepared for treatment, particularly with respect to nonclinical implications, is critical. These efforts have great potential to improve patients’ treatment experiences.