Chung Edmund Y M, Carter Simon A, Jaure Allison, Howell Martin, Bose Bhadran, Jardine Meg, Kairaitis Lukas, Keung Karen, McCarthy Hugh J, Scholes-Robertson Nicole, Sluiter Amanda, Wong Germaine, Alexander Stephen I
Centre for Kidney Research, Westmead, Australia; Faculty of Medicine and Health, University of Sydney, Camperdown, Australia.
Department of Nephrology, Royal Children's Hospital, Parkville, Australia; Paediatrics Royal Children's Hospital, Division of Medicine, Dentistry and Health Sciences, University of Melbourne, Melbourne, Australia.
Am J Kidney Dis. 2025 Sep;86(3):343-352.e1. doi: 10.1053/j.ajkd.2025.03.028. Epub 2025 Jun 17.
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.
Semistructured interview study.
SETTING & PARTICIPANTS: 20 adult participants with primary MN from 5 hospitals in Australia.
Transcripts of interviews were analyzed thematically.
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).
English-speaking participants only.
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.
膜性肾病（MN）的特点是病情反复缓解，如果不治疗，三分之一的患者会发展为肾衰竭。对于MN患者的生活经历知之甚少。本研究描述了这些经历，以指导临床护理选择并为未来研究提供参考。
半结构化访谈研究。
来自澳大利亚5家医院的20名成年原发性MN患者。
对访谈记录进行主题分析。
参与者的平均年龄为63岁，大多数为男性（85%），白人（65%），患有慢性肾脏病1至2期（45%）或3至5期（35%），正在接受透析（10%）或已接受肾移植（10%）。确定了五个主题：妨碍生活参与（包括疲惫无形、因肿胀而虚弱、治疗导致活动受限等子主题）；关系紧张（家庭生活和友谊破裂、因给他人带来负担而内疚、因疾病复发失去移植而内疚）；被治疗决策压得喘不过气来（因信息不足而感到无力、对不熟悉的疾病感到迷茫、信任并听从医疗专业人员）；对治疗感到失望（面临意外的治疗伤害、对灾难性并发症感到沮丧和恐惧、因疾病无法治愈而士气低落、无奈接受治疗毒性）；以及未来和健康不确定（无法提前规划、因缺乏切实的治疗益处而感到不安）。
仅为讲英语的参与者。
MN患者面临着慢性复发性疾病以及相关疲劳、肿胀和严重治疗伤害的负担，还有肾衰竭风险，这会影响生活参与和人际关系。认识并管理这些负担以及提供心理支持，可能有助于为MN患者提供护理并改善治疗结果。
原发性膜性肾病（MN）是一种自身免疫性肾脏疾病，常发展为肾衰竭，需要进行抑制免疫系统的治疗。通过记录原发性MN患者的经历，本研究扩展了对如何最佳护理这些患者及其治疗方案管理的理解。本研究对20名成年MN患者进行了半结构化访谈，以了解他们患这种疾病的生活经历。他们描述了受疾病症状（疲劳和肿胀）以及治疗决策和相关伤害的困扰，这些限制了他们的日常活动和人际关系。MN的复发性质以及发展为肾衰竭的风险，也使患者对未来健康感到不确定。这些发现应让临床医生了解这些负担，并提高他们提供更好沟通、患者教育以及心理/社会支持的能力。它们也为MN未来的临床研究提供了指导。
