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Patients' Perspectives on Living With Primary Membranous Nephropathy: A Semi-Structured Interview Study
Edmund Ym Chung1, Simon A Carter2, Allison Jaure3
1Centre for Kidney Research, Westmead, Australia; Faculty of Medicine and Health, University of Sydney, Camperdown, Australia.
Summary
Patients with membranous nephropathy (MN) experience significant burdens from fatigue, swelling, and treatment side effects, impacting their daily lives and relationships. Addressing these challenges and providing psychological support is crucial for improving outcomes in MN patients.
Area of Science:
- Nephrology
- Autoimmune Diseases
- Patient Experience Research
Background:
- Membranous nephropathy (MN) is a chronic autoimmune kidney disease with a relapsing-remitting course.
- A significant proportion of untreated MN patients develop kidney failure.
- Limited understanding exists regarding the lived experiences of patients with MN.
Purpose of the Study:
- To explore and describe the lived experiences of individuals with primary membranous nephropathy.
- To identify the burdens associated with MN and its treatment.
- To inform clinical care strategies and future research directions for MN.
Main Methods:
- A qualitative study employing semistructured interviews.
- 20 adult participants with primary MN were recruited from five Australian hospitals.
- Thematic analysis was used to interpret interview transcripts.
Main Results:
- Five key themes emerged: impeded life participation (fatigue, swelling, treatment restrictions), strained relationships, overwhelmed by treatment decisions, disappointment with treatment outcomes and harms, and an uncertain future.
- Participants reported significant impacts on daily activities, social connections, and emotional well-being.
- Challenges included inadequate information, unfamiliarity with the disease, and fear of complications.
Conclusions:
- Living with MN involves managing chronic symptoms, treatment side effects, and the risk of kidney failure.
- Patients face substantial impacts on their ability to participate in life and maintain relationships.
- Improved awareness, management of patient burdens, and enhanced psychological support are recommended for better patient care and outcomes.
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