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 - Royal, Virginie
AU - Holzman, Lawrence B.
AU - Adler, Sharon
AU - Alpers, Charles
AU - Matar, Raed Bou
AU - Brown, Elizabeth
AU - Choi, Michael
AU - Dell, Katherine M.
AU - Dukkipati, Ram
AU - Fervenza, Fernando C.
AU - Gadegbeku, Crystal
AU - Gipson, Patrick
AU - Hasely, Leah
AU - Hingorani, Sangeeta
AU - Hladunewich, Michelle A.
AU - Hogan, Jonathan
AU - Jefferson, J. Ashley
AU - Jhaveri, Kenar
AU - Johnstone, Duncan B.
AU - Kaskel, Frederick
AU - Kogan, Amy
AU - Kopp, Jeffrey
AU - Lemley, Kevin V.
AU - Dieguez, Laura Malaga
AU - Meyers, Kevin
AU - Neu, Alicia
AU - O'Shaughnessy, Michelle Marie
AU - O'Toole, John F.
AU - Parekh, Rulan
AU - Reich, Heather
AU - Reidy, Kimberly
AU - Rondon, Helbert
AU - Sambandam, Kamalanathan K.
AU - Sedor, John R.
AU - Schelling, Jeffrey
AU - Sperati, John C.
AU - Swiatecka-Urban, Agnes
AU - Trachtman, Howard
AU - Weisstuch, Joseph
AU - Zhdanova, Olga
AU - Gillespie, Brenda
AU - Kretzler, Matthias
AU - Robinson, Bruce M.
AU - Mariani, Laura
AU - Wladkowski, Matthew
AU - Guay-Woodford, Lisa M.
N1 - Publisher Copyright:
© 2020
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 -