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

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

CureGN Consortium

Clinical Medicine and Population Health

University of North Carolina
Center for Microbial Pathogenesis
University of Michigan Medical Center
Children's Mercy Hospital and University of Missouri−Kansas City School of Medicine
Research Institute
Helen DeVos Children's Hospital
Washington University in St. Louis
Columbia University
University of Miami Leonard M. Miller School of Medicine
Duke University School of Medicine
University of Michigan Medical School
University of Minnesota Twin Cities
Steven and Alexandra Cohen Children’s Medical Center
Emory University School of Medicine
University of Wisconsin-Madison
University of Washington

Research output: Contribution to a Journal (Peer & Non Peer) › Article › peer-review

27 Citations (Scopus)

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.

Original language	English
Pages (from-to)	1679-1689
Number of pages	11
Journal	Kidney International Reports
Volume	5
Issue number	10
DOIs	https://doi.org/10.1016/j.ekir.2020.06.041
Publication status	Published - Oct 2020

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

SDG 3 Good Health and Well-being

Keywords

edema
health-related quality of life
patient-reported outcomes
primary glomerular disease

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10.1016/j.ekir.2020.06.041

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@article{87de55906fa14f65a5cdc2c4cd110ac6,

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

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",

author = "\{CureGN Consortium\} and Murphy, \{Shannon L.\} and Mahan, \{John D.\} and Troost, \{Jonathan P.\} and Tarak Srivastava and Kogon, \{Amy J.\} and Yi Cai and Davis, \{T. Keefe\} and Hilda Fernandez and Alessia Fornoni and Gbadegesin, \{Rasheed A.\} and Emily Herreshoff and Canetta, \{Pietro A.\} and Nachman, \{Patrick H.\} and Reeve, \{Bryce B.\} and Selewski, \{David T.\} and Sethna, \{Christine B.\} and Wang, \{Chia shi\} and Bartosh, \{Sharon M.\} and Gipson, \{Debbie S.\} and Tuttle, \{Katherine R.\} and Ali Gharavi and Wooin Ahn and Appel, \{Gerald B.\} and Avasare, \{Rupali S.\} and Revekka Babayev and Ibrahim Batal and Bomback, \{Andrew S.\} and Eric Brown and Campenot, \{Eric S.\} and Pietro Canetta and Brenda Chan and D'Agati, \{Vivette D.\} and Bartosz Foroncewicz and Ghiggeri, \{Gian Marco\} and Hines, \{William H.\} and Jain, \{Namrata G.\} and Krzysztof Kiryluk and Fangming Lin and Francesca Lugani and Maddalena Marasa and Glen Markowitz and Sumit Mohan and Krzysztof Mucha and Nickolas, \{Thomas L.\} and Jai Radhakrishnan and Rao, \{Maya K.\} and Renu Regunathan-Shenk and Simone Sanna-Cherchi and Dominick Santoriello and Stokes, \{Michael B.\} and Natalie Yu and Valeri, \{Anthony M.\} and Ronald Zviti and Greenbaum, \{Larry A.\} and Smoyer, \{William E.\} and Amira Al-Uzri and Isa Ashoor and Diego Aviles and Rossana Baracco and John Barcia and Sharon Bartosh and Craig Belsha and Braun, \{Michael C.\} and Aftab Chishti and Donna Claes and Carl Cramer and Keefe Davis and Elif Erkan and Daniel Feig and Michael Freundlich and Melisha Hanna and Guillermo Hidalgo and Amrish Jain and Myda Khalid and Mahmoud Kallash and Lane, \{Jerome C.\} and John Mahan and Nisha Mathews and Carla Nester and Cynthia Pan and Hiren Patel and Adelaide Revell and Rajasree Sreedharan and Julia Steinke and Wenderfer, \{Scott E.\} and Wong, \{Craig S.\} and Ronald Falk and William Cook and Vimal Derebail and Agnes Fogo and Adil Gasim and Todd Gehr and Raymond Harris and Jason Kidd and Laurin, \{Louis Philippe\} and Will Pendergraft and Vincent Pichette and Powell, \{Thomas Brian\} and Renfrow, \{Matthew B.\} and O'Shaughnessy, \{Michelle Marie\}",

note = "Publisher Copyright: {\textcopyright} 2020",

year = "2020",

month = oct,

doi = "10.1016/j.ekir.2020.06.041",

language = "English",

volume = "5",

pages = "1679--1689",

journal = "Kidney International Reports",

issn = "2468-0249",

publisher = "Elsevier Inc.",

number = "10",

}

TY - JOUR

T1 - Longitudinal Changes in Health-Related Quality of Life in Primary Glomerular Disease

T2 - Results From the CureGN Study

AU - CureGN Consortium

AU - Murphy, Shannon L.

AU - Mahan, John D.

AU - Troost, Jonathan P.

AU - Srivastava, Tarak

AU - Kogon, Amy J.

AU - Cai, Yi

AU - Davis, T. Keefe

AU - Fernandez, Hilda

AU - Fornoni, Alessia

AU - Gbadegesin, Rasheed A.

AU - Herreshoff, Emily

AU - Canetta, Pietro A.

AU - Nachman, Patrick H.

AU - Reeve, Bryce B.

AU - Selewski, David T.

AU - Sethna, Christine B.

AU - Wang, Chia shi

AU - Bartosh, Sharon M.

AU - Gipson, Debbie S.

AU - Tuttle, Katherine R.

AU - Gharavi, Ali

AU - Ahn, Wooin

AU - Appel, Gerald B.

AU - Avasare, Rupali S.

AU - Babayev, Revekka

AU - Batal, Ibrahim

AU - Bomback, Andrew S.

AU - Brown, Eric

AU - Campenot, Eric S.

AU - Canetta, Pietro

AU - Chan, Brenda

AU - D'Agati, Vivette D.

AU - Foroncewicz, Bartosz

AU - Ghiggeri, Gian Marco

AU - Hines, William H.

AU - Jain, Namrata G.

AU - Kiryluk, Krzysztof

AU - Lin, Fangming

AU - Lugani, Francesca

AU - Marasa, Maddalena

AU - Markowitz, Glen

AU - Mohan, Sumit

AU - Mucha, Krzysztof

AU - Nickolas, Thomas L.

AU - Radhakrishnan, Jai

AU - Rao, Maya K.

AU - Regunathan-Shenk, Renu

AU - Sanna-Cherchi, Simone

AU - Santoriello, Dominick

AU - Stokes, Michael B.

AU - Yu, Natalie

AU - Valeri, Anthony M.

AU - Zviti, Ronald

AU - Greenbaum, Larry A.

AU - Smoyer, William E.

AU - Al-Uzri, Amira

AU - Ashoor, Isa

AU - Aviles, Diego

AU - Baracco, Rossana

AU - Barcia, John

AU - Bartosh, Sharon

AU - Belsha, Craig

AU - Braun, Michael C.

AU - Chishti, Aftab

AU - Claes, Donna

AU - Cramer, Carl

AU - Davis, Keefe

AU - Erkan, Elif

AU - Feig, Daniel

AU - Freundlich, Michael

AU - Hanna, Melisha

AU - Hidalgo, Guillermo

AU - Jain, Amrish

AU - Khalid, Myda

AU - Kallash, Mahmoud

AU - Lane, Jerome C.

AU - Mahan, John

AU - Mathews, Nisha

AU - Nester, Carla

AU - Pan, Cynthia

AU - Patel, Hiren

AU - Revell, Adelaide

AU - Sreedharan, Rajasree

AU - Steinke, Julia

AU - Wenderfer, Scott E.

AU - Wong, Craig S.

AU - Falk, Ronald

AU - Cook, William

AU - Derebail, Vimal

AU - Fogo, Agnes

AU - Gasim, Adil

AU - Gehr, Todd

AU - Harris, Raymond

AU - Kidd, Jason

AU - Laurin, Louis Philippe

AU - Pendergraft, Will

AU - Pichette, Vincent

AU - Powell, Thomas Brian

AU - Renfrow, Matthew B.

AU - O'Shaughnessy, Michelle Marie

PY - 2020/10

Y1 - 2020/10

N2 - 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.

AB - 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.

KW - edema

KW - health-related quality of life

KW - patient-reported outcomes

KW - primary glomerular disease

UR - https://www.scopus.com/pages/publications/85091686390

U2 - 10.1016/j.ekir.2020.06.041

DO - 10.1016/j.ekir.2020.06.041

M3 - Article

AN - SCOPUS:85091686390

SN - 2468-0249

VL - 5

SP - 1679

EP - 1689

JO - Kidney International Reports

JF - Kidney International Reports

IS - 10

ER -

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

Abstract

UN SDGs

Keywords

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