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 - Lane, Jerome C.
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
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U2 - 10.1016/j.ekir.2020.06.041
DO - 10.1016/j.ekir.2020.06.041
M3 - Article
C2 - 33102960
AN - SCOPUS:85091686390
SN - 2468-0249
VL - 5
SP - 1679
EP - 1689
JO - Kidney International Reports
JF - Kidney International Reports
IS - 10
ER -
