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Abstract: TH-PO1022

Symptoms and Health-Related Quality of Life (HRQOL) in Primary Membranous Nephropathy

Session Information

Category: Glomerular Diseases

  • 1203 Glomerular Diseases: Clinical, Outcomes, and Trials

Authors

  • Murphy, Shannon L., University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, United States
  • Powell, Jill, UNC Kidney Center, Chapel Hill, North Carolina, United States
  • Dorough, Adeline, UNC Kidney Center, Chapel Hill, North Carolina, United States
  • Mottl, Amy K., University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, United States
  • Reeve, Bryce B., Duke University, Durham, North Carolina, United States
  • Nachman, Patrick H., University of Minnesota, Minneapolis, Minnesota, United States
Background

Primary membranous nephropathy (MN) can affect patients’ HRQOL in profound and differing ways. Better understanding patient perspectives on disease experience may identify important outcomes to consider in clinical trials and facilitate more patient-centered care. To our knowledge, symptoms and HRQOL have not been richly characterized among individuals with MN. We sought to address this gap by exploring patient experiences with MN with a focus on symptoms and HRQOL.

Methods

We conducted 45-60 minute semi-structured interviews with 13 adults with primary MN. Inclusion criteria included active disease in the last 5 years and non-dialysis dependence. We used purposive sampling to achieve heterogeneity on relevant demographic and clinical characteristics. Interviews were recorded and professionally transcribed. Transcripts were coded independently by two team members and analyzed for concepts and themes.

Results

Participants ranged 40-68 years old, with 46% male and 85% Caucasian. Each had lived with MN for 1-14 years (5.3 ± 4.4), had peak proteinuria ranging from subnephrotic to 23 g, and serum albumin ranging from normal to 1.5 g/dL. Treatment regimens included steroids (N=6), cyclophosphamide (N=6), calcineurin inhibitors (N=7), rituximab (N=9), and conservative management (N=2).

The most common symptoms were 1) lower extremity edema (92%), 2) fatigue (77%), 3) pain or discomfort due to swelling (62%), 4) weight gain (46%), and 5) sleep changes (38%). Other reported symptoms included cramping, itching, and irritability.

We identified 5 major themes: 1) experiencing sacrifice and loss, 2) feeling powerless in the face of disease, 3) navigating uncertainty, 4) living with constant worry, and 5) developing strategies and evolving perspective to cope. Overall, participants frequently struggled with the substantial physical, emotional, social, and/or financial effects of MN; yet, with time, many developed adaptive coping skills and often changed their outlook on life for the better.

Conclusion

These data shed light on the substantial burdens born by individuals with primary MN. Development of a MN-specific patient-reported outcomes instrument that captures symptoms and HRQOL is an important next step to facilitate focus on patient-centered outcomes in research and clinical care.

Funding

  • Other NIH Support