Introduction: Prior cross-sectional studies suggest that health-related quality of life (HRQOL) worsens with more severe glomerular disease. This longitudinal analysis was conducted to assess changes in HRQOL with changing disease status. Methods: Cure Glomerulonephropathy (CureGN) is a cohort of patients with minimal change disease, focal segmental glomerulosclerosis, membranous nephropathy, IgA vasculitis, or IgA nephropathy. HRQOL was assessed at enrollment and follow-up visits 1 to 3 times annually for up to 5 years with the Patient-Reported Outcomes Measurement Information System (PROMIS). Global health, anxiety, and fatigue domains were measured in all; mobility was measured in children; and sleep-related impairment was measured in adults. Linear mixed effects models were used to evaluate HRQOL responsiveness to changes in disease status. Results: A total of 469 children and 1146 adults with PROMIS scores were included in the analysis. HRQOL improved over time in nearly all domains, though group-level changes were modest. Edema was most consistently associated with worse HRQOL across domains among children and adults. A greater number of symptoms also predicted worse HRQOL in all domains. Sex, age, obesity, and serum albumin were associated with some HRQOL domains. The estimated glomerular filtration rate (eGFR) was only associated with fatigue and adult physical health; proteinuria was not associated with any HRQOL domain in adjusted models. Conclusion: HRQOL measures were responsive to changes in disease activity, as indicated by edema. HRQOL over time was not predicted by laboratory-based markers of disease. Patient-reported edema and number of symptoms were the strongest predictors of HRQOL, highlighting the importance of the patient experience in glomerular disease. HRQOL outcomes inform understanding of the patient experience for children and adults with glomerular diseases.
Bibliographical noteFunding Information:
Funding for the CureGN consortium is provided by UM1DK100845, UM1DK100846, UM1DK100876, UM1DK100866, and UM1DK100867 from the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). Patient recruitment is supported by NephCure Kidney International. This project was also supported in part by UL1TR002240 from the National Center for Advancing Translational Sciences (NCATS) for the Michigan Institute for Clinical and Health Research.
JT owns equity/stock in General Electric and Procter & Gamble, and receives grant support from Pfizer Inc. TS receives consulting fees and advisory board membership fees from ALNYLAM and current grant support and research funding from National Institutes of Health–National Institute of Diabetes and Digestive and Kidney Diseases (NIH-NIDDK), Bristol-Myers-Squibb, Retrophin, Mallinckdrodt, and Alexion; and royalty from UpToDate. HF reports current grant support RANSFORM KL2 Scholars Mentored Career Development “Genomic Disorders, Chronic Kidney Disease and Neurocognitive Status in Children.” AF receives consulting fees and advisory board membership fees from Variant Pharmaceutical, DImerix ONO; Equity/stock Variant Pharmaceutical (unrelated), NIH grant support. PHN reports current grant support from NIH Immune Tolerance Network. CBS receives consulting fees and advisory board membership fees from Kite Medical. CW reports lecture fees from Mallinckrodt Pharmaceuticals. SB reports current grant support for multicenter NIH-sponsored trials. DSG receives consulting fees and advisory board membership fees paid to the University of Michigan; current grant support from Retrophin, Complexa, BMS, Variant, Goldfinch, NIH; and additional support from Nephcure Kidney International is under negotiation. KRT receives consulting fees and advisory board membership fees from Eli Lilly and Company, Boehringer Ingelheim, Astra Zeneca, Gilead, Goldfinch Bio; lecture fees from Eli Lilly and Company, Astra Zeneca; travel support from Eli Lilly and Company; current grant support from NIDDK, NCATS, and CDC; and additional support from Goldfinch Bio is under negotiation. All the other authors declared no competing interests.
- health-related quality of life
- patient-reported outcomes
- primary glomerular disease
PubMed: MeSH publication types
- Journal Article