Longitudinal Changes in Health-Related Quality of Life in Primary Glomerular Disease: Results From the CureGN Study

• Type of Material: Article
• Authors: Shannon L. Murphy, University of North Carolina; John D. Mahan, Nationwide Children's Hospital; Jonathan P. Troost, University of Michigan; Tarak Srivastava, University of Missouri; Amy J. Kogon, Children's Hospital of Pennsylvania; Yi Cai, Helen DeVos Children's Hospital; T. Keefe Davis, Washington University in St. Louis; Hilda Fernandez, Columbia University; Alessia Fornoni, University of Miami; Rasheed A. Gbadegesin, Duke University; Emily Herreshoff, University of Michigan; Pietro A. Canetta, Columbia University; Patrick H. Nachman, University of Minnesota; Bryce B. Reeve, Duke University; David T. Selewski, University of Michigan; Christine B. Sethna, Cohen Children's Medical Center; Chia-shi Wang, Emory University; Sharon M. Bartosh, University of Wisconsin; Debbie S. Gipson, University of Michigan; Katherine R. Tuttle, University of Washington; Larry Greenbaum, Emory University
• Language: English
• Date: 2020-10-01
• Publisher: ELSEVIER SCIENCE INC
• Publication Version: Final Published Version
• Copyright Statement: © 2020 Published by Elsevier, Inc., on behalf of the International Society of Nephrology.
• License: Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International
• Final Published Version (URL): http://dx.doi.org/10.1016/j.ekir.2020.06.041
• Title of Journal or Parent Work: KIDNEY INTERNATIONAL REPORTS
• Volume: 5
• Issue: 10
• Start Page: 1679
• End Page: 1689
• Grant/Funding 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.
• Keywords: PATIENT-REPORTED OUTCOMES; Urology & Nephrology; primary glomerular disease; Life Sciences & Biomedicine; patient-reported outcomes; CONTENT VALIDITY; edema; NEPHROTIC SYNDROME; health-related quality of life; Science & Technology; PRO INSTRUMENTS
• Research Categories: Health Sciences, Medicine and Surgery

Abstract

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.