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

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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 - NIDDK Support, NIDDK Support

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