Abstract: SA-PO0793
Thematic Analysis of Patient Perspectives on Care and Unmet Needs in C3 Glomerulopathy and Primary Immune Complex-Mediated Membranoproliferative Glomerulonephritis
Session Information
- Glomerular Research: Design, Registries, Surveys, and Epidemiology
November 08, 2025 | Location: Exhibit Hall, Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Glomerular Diseases
- 1402 Glomerular Diseases: Clinical, Outcomes, and Therapeutics
Authors
- Norouzi, Sayna, Division of Nephrology, Loma Linda University Medical Center, Loma Linda, California, United States
- Caravaca-Fontan, Fernando, Department of Nephrology, Instituto de Investigación Hospital 12 de Octubre (imas12), Madrid, Spain
- Huang, Mingyi, Apellis Pharmaceuticals Inc, Waltham, Massachusetts, United States
- Rich, Carly S, Swedish Orphan Biovitrum AB publ, Stockholm, Stockholm County, Sweden
- Gordon, Katie, Apellis Pharmaceuticals Inc, Waltham, Massachusetts, United States
- Quintana, Lucia, Swedish Orphan Biovitrum AB publ, Stockholm, Stockholm County, Sweden
- Holdsworth, Elizabeth A, Adelphi Real World, Bollington, England, United Kingdom
Background
C3 glomerulopathy (C3G) and primary (idiopathic) immune complex membranoproliferative glomerulonephritis (IC-MPGN) are rare chronic kidney diseases. The aim of this study was to understand patient perceptions of care and unmet needs in the US and Europe.
Methods
In a cross-sectional qualitative study, interviews were conducted with 13 patients with C3G/primary IC-MPGN (n=2 US; n=11 EU). Themes amongst coded transcripts were evaluated and refined until consensus was reached.
Results
Patients described variable experiences in receiving a timely diagnosis, 8 patients described a prolonged period before referral to a nephrologist and biopsy. These patients were “milder” upon initial presentation and were misdiagnosed or repeatedly monitored in primary care (“It took me forever to get an appointment with the nephrologist….Over many, many years.” Patient, DE). Four patients presented with acute symptoms (e.g. edema, pain) and received a diagnosis quickly.
Fatigue/exhaustion was cited as a highly burdensome symptom by 8 patients, with a physical and cognitive impact (“My brain works less well.” Patient, FR), and impacts on the ability to work, socialise, exercise, have hobbies, and mood (“…tiredness…that’s the main thing this is why I work part time. I just do everything at a much slower pace and don’t do some of the things that I used to do.” Patient, UK; “I couldn’t play football, work…it was a lot of emotions.” Patient, ES). Emotional burden of disease was also significant, 11 patients described irritability and frustration, and 8 described anxiety and fears for the future (“My scare still today is that both kidneys completely give out, they’re unresponsive to even dialysis.” Patient, US).
Four patients noted that weight gain due to corticosteroid use severely impacted their self-image and relationships with others (“I think it affects my relationship with my partner because it's given me, obviously, very bad self-esteem issues.” Patient, UK).
Conclusion
Patients frequently experience delays in diagnosis and symptoms which impact their physical, and emotional health. Furthermore, existing treatments cause side effects which further compound the impact of the disease. Findings from this study underscore the urgent need for timely diagnosis and effective targeted therapies.
Funding
- Commercial Support – Swedish Orphan Biovitrum AB, Apellis Pharmaceuticals Inc.