Health-related quality of life in glomerular disease

• Type of Material: Article
• Authors: Pietro A. Canetta, Columbia University; Jonathan P. Troost, University of Michigan; Shannon Mahoney, University of North Carolina; Amy J. Kogon, Childrens Hospital of Pennsylvania; Noelle Carlozzi, University of Michigan; Sharon M. Bartosh, University of Wisconsin; Yi Cai, Helen DeVos Childrens Hospital; Tarak Srivastava Davis, Washington University; Larry Greenbaum, Emory University; Chia-shi Wang, Emory University
• Language: English
• Date: 2019-05-01
• Publisher: Elsevier Science Inc.
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: © 2019 International Society of Nephrology. Published by Elsevier Inc. All rights reserved.
• License: Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International
• Final Published Version (URL): http://dx.doi.org/10.1016/j.kint.2018.12.018
• Title of Journal or Parent Work: Kidney International
• Volume: 95
• Issue: 5
• Start Page: 1209
• End Page: 1224
• Grant/Funding Information: Patient recruitment is supported by NephCure Kidney International.; Funding for the CureGN Consortium is provided by UM1DK100845, UM1DK100846, UM1DK100876, UM1DK100866, and UM1 DK100867 from the National Institute of Diabetes and Digestive and Kidney Diseases.
• Keywords: health-related quality of life; Life Sciences & Biomedicine; Urology & Nephrology; Children; primary glomerular disease; patient-reported outcomes; Trials; Patient reported outcomes; Composite scores; Domains; Nephrotic syndrome; Science & Technology; Validity; edema
• Research Categories: Engineering, Biomedical; Health Sciences, Human Development; Biology, Biostatistics; Health Sciences, Medicine and Surgery

Abstract

There is scant literature describing the effect of glomerular disease on health-related quality of life (HRQOL). The Cure Glomerulonephropathy study (CureGN) is an international longitudinal cohort study of children and adults with four primary glomerular diseases (minimal change disease, focal segmental glomerulosclerosis, membranous nephropathy, and IgA nephropathy). HRQOL is systematically assessed using items from the Patient-Reported Outcomes Measurement Informative System (PROMIS). We assessed the relationship between HRQOL and demographic and clinical variables in 478 children and 1115 adults at the time of enrollment into CureGN. Domains measured by PROMIS items included global assessments of health, mobility, anxiety, fatigue, and sleep impairment, as well as a derived composite measure incorporating all measured domains. Multivariable models were created that explained 7 to 32% of variance in HRQOL. Patient-reported edema consistently had the strongest and most robust association with each measured domain of HRQOL in multivariable analysis (adjusted β [95% CI] for composite PROMIS score in children, -5.2 [-7.1 to -3.4]; for composite PROMIS score in adults, -6.1 [-7.4 to -4.9]). Female sex, weight (particularly obesity), and estimated glomerular filtration rate were also associated with some, but not all, domains of HRQOL. Primary diagnosis, disease duration, and exposure to immunosuppression were not associated with HRQOL after adjustment. Sensitivity analyses and interaction testing demonstrated no significant association between disease duration or immunosuppression and any measured domain of HRQOL. Thus, patient-reported edema has a consistent negative association with HRQOL in patients with primary glomerular diseases, with substantially greater impact than other demographic and clinical variables.