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

Shannon L Murphy; John D Mahan; Jonathan P Troost; Tarak Srivastava; Amy J Kogon; Yi Cai; T Keefe Davis; Hilda Fernandez; Alessia Fornoni; Rasheed A Gbadegesin; Emily Herreshoff; Pietro A Canetta; Patrick H Nachman; Bryce B Reeve; David T Selewski; Christine B Sethna; Chia-Shi Wang; Sharon M Bartosh; Debbie S Gipson; Katherine R Tuttle; CureGN Consortium

doi:10.1016/j.ekir.2020.06.041

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

Kidney Int Rep. 2020 Jul 23;5(10):1679-1689. doi: 10.1016/j.ekir.2020.06.041. eCollection 2020 Oct.

Authors

Shannon L Murphy¹, John D Mahan², Jonathan P Troost³, Tarak Srivastava⁴, Amy J Kogon⁵, Yi Cai⁶, T Keefe Davis⁷, Hilda Fernandez⁸, Alessia Fornoni⁹, Rasheed A Gbadegesin¹⁰, Emily Herreshoff¹¹, Pietro A Canetta⁸, Patrick H Nachman¹², Bryce B Reeve¹³, David T Selewski¹¹, Christine B Sethna¹⁴, Chia-Shi Wang¹⁵, Sharon M Bartosh¹⁶, Debbie S Gipson¹¹, Katherine R Tuttle¹⁷; CureGN Consortium

Collaborators

CureGN Consortium:
Ali Gharavi, Wooin Ahn, Gerald B Appel, Rupali S Avasare, Revekka Babayev, Ibrahim Batal, Andrew S Bomback, Eric Brown, Eric S Campenot, Pietro Canetta, Brenda Chan, Vivette D D'Agati, Hilda Fernandez, Bartosz Foroncewicz, Gian Marco Ghiggeri, William H Hines, Namrata G Jain, Krzysztof Kiryluk, Fangming Lin, Francesca Lugani, Maddalena Marasa, Glen Markowitz, Sumit Mohan, Krzysztof Mucha, Thomas L Nickolas, Jai Radhakrishnan, Maya K Rao, Renu Regunathan-Shenk, Simone Sanna-Cherchi, Dominick Santoriello, Michael B Stokes, Natalie Yu, Anthony M Valeri, Ronald Zviti, Larry A Greenbaum, William E Smoyer, Amira Al-Uzri, Isa Ashoor, Diego Aviles, Rossana Baracco, John Barcia, Sharon Bartosh, Craig Belsha, Michael C Braun, Aftab Chishti, Donna Claes, Carl Cramer, Keefe Davis, Elif Erkan, Daniel Feig, Michael Freundlich, Melisha Hanna, Guillermo Hidalgo, Amrish Jain, Myda Khalid, Mahmoud Kallash, Jerome C Lane, John Mahan, Nisha Mathews, Carla Nester, Cynthia Pan, Hiren Patel, Adelaide Revell, Rajasree Sreedharan, Julia Steinke, Scott E Wenderfer, Craig S Wong, Ronald Falk, William Cook, Vimal Derebail, Agnes Fogo, Adil Gasim, Todd Gehr, Raymond Harris, Jason Kidd, Louis-Philippe Laurin, Will Pendergraft, Vincent Pichette, Thomas Brian Powell, Matthew B Renfrow, Virginie Royal, Lawrence B Holzman, Sharon Adler, Charles Alpers, Raed Bou Matar, Elizabeth Brown, Michael Choi, Katherine M Dell, Ram Dukkipati, Fernando C Fervenza, Alessia Fornoni, Crystal Gadegbeku, Patrick Gipson, Leah Hasely, Sangeeta Hingorani, Michelle A Hladunewich, Jonathan Hogan, J Ashley Jefferson, Kenar Jhaveri, Duncan B Johnstone, Frederick Kaskel, Amy Kogan, Jeffrey Kopp, Kevin V Lemley, Laura Malaga- Dieguez, Kevin Meyers, Alicia Neu, Michelle Marie O'Shaughnessy, John F O'Toole, Rulan Parekh, Heather Reich, Kimberly Reidy, Helbert Rondon, Kamalanathan K Sambandam, John R Sedor, David T Selewski, Christine B Sethna, Jeffrey Schelling, John C Sperati, Agnes Swiatecka-Urban, Howard Trachtman, Katherine R Tuttle, Joseph Weisstuch, Olga Zhdanova, Brenda Gillespie, Debbie S Gipson, Emily Herreshoff, Matthias Kretzler, Bruce M Robinson, Laura Mariani, Jonathan P Troost, Matthew Wladkowski, Lisa M Guay-Woodford

Affiliations

¹ Division of Nephrology, Department of Medicine, University of North Carolina, Chapel Hill, North Carolina, USA.
² Division of Nephrology and Hypertension, Nationwide Children's Hospital, Columbus, Ohio, USA.
³ Michigan Institute for Clinical and Health Research, University of Michigan, Ann Arbor, Michigan, USA.
⁴ Division of Nephrology, Department of Pediatrics, University of Missouri-Kansas City, Kansas City, Missouri, USA.
⁵ Division of Nephrology, Children's Hospital of Pennsylvania, Philadelphia, Pennsylvania, USA.
⁶ Division of Pediatric Nephrology, Helen DeVos Children's Hospital, Grand Rapids, Michigan, USA.
⁷ Division of Pediatric Nephrology, Washington University, St Louis, Missouri, USA.
⁸ Division of Nephrology, Columbia University, New York, New York, USA.
⁹ Department of Medicine, University of Miami, Miami, Florida, USA.
¹⁰ Department of Pediatrics, Duke University, Durham, North Carolina, USA.
¹¹ Department of Medicine, University of Michigan, Ann Arbor, Michigan, USA.
¹² Division of Nephrology and Hypertension, University of Minnesota, Minneapolis, Minnesota, USA.
¹³ Department of Population Health Sciences, Center for Health Measurement, Duke University, Durham, North Carolina, USA.
¹⁴ Division of Pediatric Nephrology, Cohen Children's Medical Center, New Hyde Park, New York, New York, USA.
¹⁵ Division of Nephrology, Department of Pediatrics, Emory University, Atlanta, Georgia, USA.
¹⁶ Division of Pediatric Nephrology, University of Wisconsin, Madison, Wisconsin, USA.
¹⁷ Division of Nephrology, Providence Health Care, University of Washington, Spokane, Washington, USA.

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.

Keywords: edema; health-related quality of life; patient-reported outcomes; primary glomerular disease.

Abstract

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