Patient Perspectives on Their Home Peritoneal Dialysis Experience: A Qualitative Study.

Abstract

Background: The 2019 Advancing American Kidney Health initiative greatly incentivized increased home dialysis. However, peritoneal dialysis (PD) uptake in the United States has increased only modestly, and, although PD is associated with quality-of-life benefits for many patients, individual patient experiences of disease and treatment burden can vary greatly. Gaps remain in understanding the lived experience and impact of PD on patients.

Methods: Current and former PD patients (age ≥18 years) who received PD in 2019 or later were recruited between 2022 and 2025. Semi-structured interviews explored experiences along their PD journey, including modality discussions, technical and logistical aspects of home dialysis, and the physical, emotional, and social impacts of treatment. Interviews also addressed challenges encountered during PD and, when applicable, circumstances surrounding PD-to-hemodialysis transfer. Interviews were audio-recorded, transcribed, double-coded, and analyzed using thematic analysis.

Results: In interviews with 31 current and former PD patients, three interrelated themes emerged. First, patients' desire for normalcy was grounded in individualized characterizations of freedom and independence. Freedom was defined differently across patients but considered essential regardless of modality, while independence reflected the ability to manage life and health, even when support from others was needed. Normalcy was described as attaining or maintaining an expected lifestyle. Second, PD's technical demands and home-based logistics strongly shaped treatment experiences. Third, patients highly valued relief of kidney failure-related symptoms. These themes often interacted in complex and sometimes conflicting ways.

Conclusions: Patients' experiences with PD vary widely. We propose a conceptual model linking patients' feelings of normalcy, freedom, and independence to their PD experiences and specifically to modifiable aspects of PD care, including technical features of therapy, home-based logistics, and availability of support. This model aims to facilitate improved, patient-centered delivery of home dialysis.