Kidney International Reports (Oct 2020)

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,
  • 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, MD,
  • 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

Journal volume & issue
Vol. 5, no. 10
pp. 1679 – 1689

Abstract

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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.

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