Patients' Perspectives on Living With Primary Membranous Nephropathy: A Semi-Structured Interview Study.

Rationale & Objective: Membranous nephropathy (MN) is characterized by a relapsing remitting course with a third of patients developing kidney failure if untreated. Little is known about the experiences patients have when living with MN. This study described those experiences to inform choices of clinical care and guide future research.

Study Design: Semistructured interview study.

Setting & Participants: 20 adult participants with primary MN from 5 hospitals in Australia.

Analytical Approach: Transcripts of interviews were analyzed thematically.

Results: The participants had a mean age of 63 years, were mostly men (85%) and White (65%), and had chronic kidney disease stages 1 to 2 (45%) or stages 3 to 5 (35%), were receiving dialysis (10%), or had received a kidney transplant (10%). Five themes were identified: impeding life participation (with subthemes of invisibility of exhaustion, debilitated by swelling, restricted activity from treatment); strained relationships (fractured family life and friendships, the guilt of burdening others, guilt of losing a transplant from recurrent disease); overwhelmed by treatment decision making (disempowered by inadequate information, disorientated by an unfamiliar disease, trusting and deferring to health professionals); disappointed with treatment (confronting unexpected treatment harms, frustration and fear of catastrophic complications, demoralized by the incurability of disease, resigned to accept treatment toxicity); and uncertain future and health (unable to plan ahead, insecurity from lack of tangible treatment benefit).

Limitations: English-speaking participants only.

Conclusions: Participants with MN face the burden of living with a chronic relapsing disease and associated fatigue, swelling, and substantial treatment harms with the risk of kidney failure that impact life participation and relationships. Awareness and management of these burdens and psychological support may inform care and improve outcomes among patients living with MN.

Plain-language Summary: Primary membranous nephropathy (MN) is an autoimmune kidney disease that often progresses to kidney failure, necessitating treatments that suppress the immune system. By recording the experiences of people living with primary MN, this study expands the understanding of how to best care for these patients and manage their treatment regimens. This study implemented semistructured interviews of 20 adults with MN to understand their lived experiences with this disease. They described being burdened by disease symptoms (fatigue and swelling) and the decisions regarding treatments and associated harms that limit their daily activities and relationships. The relapsing nature of MN and risk of progressing to kidney failure also caused patients to experience uncertainty about their future health. These findings should inform clinicians about these burdens and promote their ability to provide better communication, patient education, and psychological/social support. They also serve as a guide for future clinical research in MN.