Acute Care Visits and Subsequent Health-Related Quality of Life among Children and Adults with Glomerular Disease in the Cure Glomerulonephropathy (CureGN) Cohort

Introduction: Health-related quality of life (HRQOL) is an important patient-reported aspect of overall health and is understudied in patients with glomerular disease (GD). Conflicting data have emerged regarding whether acute care visits (ACV) are associated with HRQOL. This report describes types of ACVs and their short-term impact on HRQOL in patients with minimal change disease (MCD), IgA nephropathy/vasculitis (IgAN/IgAV), focal segmental glomerulosclerosis (FSGS), and membranous nephropathy (MN). Methods: The Cure Glomerulonephropathy (CureGN) network is an observational prospective cohort study that has enrolled children and adults diagnosed with MCD, FSGS, MN, or IgAN/IgAV from 71 clinical centers across the United States, Canada, and Europe since December 2014. We used linear mixed effects models to examine the association between frequency of ACVs over a three-month period and subsequent Patient-Reported Outcomes Measurement Information System (PROMIS) scores, accounting for previous PROMIS scores, clinical characteristics, medication use, comorbid conditions, and socioeconomic indicators. Results: The study included 2,393 patients, 1,282 of whom experienced at least one ACV with a total of 3,555 ACVs (33.3 per 100 person-years) observed during CureGN study follow-up. The most frequent ACV-related diagnoses were categorized as infectious, gastrointestinal, hypertensive, or cardiovascular in origin. Two additional ACVs were associated with clinically and statistically significantly worse general physical health among adults; self-reported fatigue, mobility, and global health in children; and parent-reported fatigue, mobility, and global health in children. Only one additional ACV was associated with clinically and significantly worse fatigue among patients with cyclophosphamide exposure and parent-reported mobility among children ages 8 to <11. Conclusions: Increasing ACV burden was associated with lower HRQOL across multiple physical health domains for patients with GD. Our study reinforces the health care burden experienced by patients with GD and identifies risk factors for deterioration in HRQOL.