Kidney Week

Abstract: SA-PO0785

Health-Related Quality of Life Across the Lifespan in Glomerular Diseases: Report of the Cure Glomerulonephropathy (CureGN) Research Consortium

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

• Kohli-Lynch, Ciaran, Northwestern University Feinberg School of Medicine, Chicago, Illinois, United States

Ciaran Kohli-Lynch, PhD

• Helmuth, Margaret, University of Michigan, Ann Arbor, Michigan, United States

Margaret Helmuth, MA

• Smith, Abigail R., Northwestern University Feinberg School of Medicine, Chicago, Illinois, United States

Abigail R. Smith, PhD

• Modi, Zubin J., University of Michigan, Ann Arbor, Michigan, United States

Zubin J. Modi, MD, MS

• Khalid, Myda, Riley Hospital for Children at Indiana University Health, Indianapolis, Indiana, United States

Myda Khalid, MD

• Sethna, Christine B., Cohen Children's Medical Center, New York, New York, United States

Christine B. Sethna, MD, MEd

• Smoyer, William E., Nationwide Children's Hospital, Columbus, Ohio, United States

William E. Smoyer, MD

• Greenbaum, Larry A., Emory University, Atlanta, Georgia, United States

Larry A. Greenbaum, MD, PhD

• Robinson, Bruce M., University of Michigan, Ann Arbor, Michigan, United States

Bruce M. Robinson, MD, MS, FASN

• Wang, Chia-Shi, Emory University, Atlanta, Georgia, United States

Chia-Shi Wang, MD, MS

Group or Team Name

• On behalf of the Cure Glomerulonephropathy Study Consortium.

Background

Primary glomerular disease (GD) is a chronic condition with significant management burden and associated morbidity. We describe health-related quality of life (HRQoL) among adults with minimal change disease (MCD), focal segmental glomerulosclerosis (FSGS), membranous nephropathy (MN), and IgA nephropathy (IgAN) to understand patient perceptions and promote patient-centered management.

Methods

We included adults (aged ≥18y) enrolled in the CureGN observational cohort from centers in North America and Europe with at least 2 years of follow-up data. With age at biopsy diagnosis as the primary predictor, we examined trends in HRQoL measured with the Patient-Reported Outcomes Measurement Information System (PROMIS). We used a validated mapping algorithm to translate PROMIS scores to health-related utility (HRU) to understand patient-values placed on different health states. To account for non-normally distributed data, Pairwise Wilcoxon tests compared HRQoL across age groups. We also described the change in HRQoL as a percentage change from baseline.

Results

In total, 916 patients (MCD N=127, FSGS N=212, MN N=277, IgAN N=300) with a mean follow-up of 6.8 years (SD 2.1) were included. Mean HRU was highest for those aged 18-44y at biopsy (0.835, SE 0.008), compared to 45-64y (0.775, SE 0.010) and 65+y (0.798, SE 0.014). Pairwise comparisons showed significantly greater HRU for those aged 18-44y compared to 45-64y (p<0.001) and 65+y (p=0.037); no significant difference was observed between the latter groups (p=0.32). Proportional improvement in HRU was 1.9% (SE 1.4%) for those aged 65+y at biopsy, 3.1% (SE 0.9%) for 18-44y, and 5.3% (SE 0.9%) for 45-64y.

Conclusion

In this study of adult CureGN participants, HRU differed by age at biopsy for patients with primary GD. Future research will estimate the years and quality-adjusted life years lost from GD across the lifespan of patients.

Funding

• NIDDK Support

Digital Object Identifier (DOI)

• doi: 10.1681/ASN.2025yjt0x7gg