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

2020; Elsevier BV; Volume: 5; Issue: 10 Linguagem: Inglês

10.1016/j.ekir.2020.06.041

2468-0249

Shannon L. Murphy, John D. Mahan, Jonathan P. Troost, Tarak Srivastava, Amy J. Kogon, Yi Cai, T. Keefe Davis, Hilda Fernández, Alessia Fornoni, Rasheed Gbadegesin, Emily Herreshoff, Pietro A. Canetta, Patrick H. Nachman, Bryce B. Reeve, David T. Selewski, Christine B. Sethna, Chia-shi Wang, Sharon Bartosh, Debbie S. Gipson, Katherine R. Tuttle, Ali G. Gharavi, Wooin Ahn, Gerald B. Appel, Rupali S. Avasare, Revekka Babayev, Ibrahim Batal, Andrew S. Bomback, Eric J. Brown, Eric S. Campenot, Pietro A. Canetta, Brenda Chan, Vivette D. D’Agati, Hilda Fernández, Bartosz Foroncewicz, Gian Marco Ghiggeri, William H. Hines, Namrata G. Jain, Krzysztof Kiryluk, Fangming Lin, Francesca Lugani, Maddalena Marasà, Glen S. 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 Avilés, Rossana Baracco, John Barcia, Sharon Bartosh, Craig W. Belsha, Michael Braun, Aftab S. Chishti, Donna Claes, Carl H. Cramer, Keefe Davis, Elif Erkan, Daniel I. Feig, Michael Freundlich, Melisha Hanna, Guillermo Hidalgo, Amrish Jain, Myda Khalid, Mahmoud Kallash, Jerome C. Lane, John D. Mahan, Nisha Mathews, Carla Nester, Cynthia G. Pan, Hiren P. Patel, Adelaide Revell, Rajasree Sreedharan, Julia Steinke, Scott E. Wenderfer, Craig S. Wong, Ronald J. Falk, W. James Cook, Vimal K. Derebail, Agnes B. Fogo, Adil Gasim, Todd W.B. Gehr, Raymond C. Harris, Jason M. Kidd, Louis-Philippe Laurin, Will Pendergraft, Vincent Pichette, Thomas Brian Powell, Matthew B. Renfrow, Virginie Royal, Lawrence B. Holzman, Sharon G. Adler, Charles E. Alpers, Raed Bou Matar, Elizabeth Brown, Michael Choi, Katherine M. Dell, Ram Dukkipati, Fernando C. Fervenza, Alessia Fornoni, Crystal A. Gadegbeku, Patrick Gipson, Leah Hasely, Sangeeta Hingorani, Michelle Hladunewich, Jonathan Hogan, J. Ashley Jefferson, Kenar D. Jhaveri, Duncan B. Johnstone, Frederick J. Kaskel, Amy Kogan, Jeffrey B. Kopp, Kevin V. Lemley, Laura Malaga- Dieguez, Kevin Meyers, Alicia M. Neu, Michelle M. O’Shaughnessy, John F. O’Toole, Rulan S. Parekh, Heather N. Reich, Kimberly Reidy, Helbert Rondon‐Berrios, Kamalanathan K. Sambandam, John R. Sedor, David T. Selewski, Christine B. Sethna, Jeffrey R. Schelling, C. John Sperati, Agnieszka Swiatecka‐Urban, Howard Trachtman, Katherine R. Tuttle, Joseph Weisstuch, Olga Zhdanova, Brenda W. Gillespie, Debbie S. Gipson, Emily Herreshoff, Matthias Kretzler, Bruce Robinson, Laura Mariani, Jonathan P. Troost, Matthew Wladkowski, Lisa M. Guay‐Woodford,

Pregnancy and Medication Impact

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.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.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.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.