TY - JOUR
T1 - Health-related quality of life in glomerular disease
AU - CureGN Consortium
AU - Canetta, Pietro A.
AU - Troost, Jonathan P.
AU - Mahoney, Shannon
AU - Kogon, Amy J.
AU - Carlozzi, Noelle
AU - Bartosh, Sharon M.
AU - Cai, Yi
AU - Davis, T. Keefe
AU - Fernandez, Hilda
AU - Fornoni, Alessia
AU - Gbadegesin, Rasheed A.
AU - Herreshoff, Emily
AU - Mahan, John D.
AU - Nachman, Patrick H.
AU - Selewski, David T.
AU - Sethna, Christine B.
AU - Srivastava, Tarak
AU - Tuttle, Katherine R.
AU - Wang, Chia shi
AU - Falk, Ronald J.
AU - Gharavi, Ali G.
AU - Gillespie, Brenda W.
AU - Greenbaum, Larry A.
AU - Holzman, Lawrence B.
AU - Kretzler, Matthias
AU - Robinson, Bruce M.
AU - Smoyer, William E.
AU - Guay-Woodford, Lisa M.
AU - Reeve, Bryce
AU - Gipson, Debbie S.
AU - Ahn, Wooin
AU - Appel, Gerald B.
AU - Babayev, Revekka
AU - Batal, Ibrahim
AU - Bomback, Andrew S.
AU - Brown, Eric
AU - Campenot, Eric S.
AU - Canetta, Pietro
AU - Carlassara, Lucrezia
AU - Chan, Brenda
AU - Chatterjee, Debanjana
AU - D'Agati, Vivette D.
AU - Delbarba, Elisa
AU - Dogra, Samriti
AU - Foroncewicz, Bartosz
AU - Alachkar, Nada
AU - Bagnasco, Serena
AU - Choi, Michael
AU - Neu, Alicia
AU - Sperati, John C.
N1 - Funding Information:
Funding for the CureGN Consortium is provided by UM1DK100845, UM1DK100846, UM1DK100876, UM1DK100866, and UM1DK100867 from the National Institute of Diabetes and Digestive and Kidney Diseases . Patient recruitment is supported by NephCure Kidney International .
Publisher Copyright:
© 2019 International Society of Nephrology
PY - 2019/5
Y1 - 2019/5
N2 - There is scant literature describing the effect of glomerular disease on health-related quality of life (HRQOL). The Cure Glomerulonephropathy study (CureGN) is an international longitudinal cohort study of children and adults with four primary glomerular diseases (minimal change disease, focal segmental glomerulosclerosis, membranous nephropathy, and IgA nephropathy). HRQOL is systematically assessed using items from the Patient-Reported Outcomes Measurement Informative System (PROMIS). We assessed the relationship between HRQOL and demographic and clinical variables in 478 children and 1115 adults at the time of enrollment into CureGN. Domains measured by PROMIS items included global assessments of health, mobility, anxiety, fatigue, and sleep impairment, as well as a derived composite measure incorporating all measured domains. Multivariable models were created that explained 7 to 32% of variance in HRQOL. Patient-reported edema consistently had the strongest and most robust association with each measured domain of HRQOL in multivariable analysis (adjusted β [95% CI] for composite PROMIS score in children, -5.2 [-7.1 to -3.4]; for composite PROMIS score in adults, -6.1 [-7.4 to -4.9]). Female sex, weight (particularly obesity), and estimated glomerular filtration rate were also associated with some, but not all, domains of HRQOL. Primary diagnosis, disease duration, and exposure to immunosuppression were not associated with HRQOL after adjustment. Sensitivity analyses and interaction testing demonstrated no significant association between disease duration or immunosuppression and any measured domain of HRQOL. Thus, patient-reported edema has a consistent negative association with HRQOL in patients with primary glomerular diseases, with substantially greater impact than other demographic and clinical variables.
AB - There is scant literature describing the effect of glomerular disease on health-related quality of life (HRQOL). The Cure Glomerulonephropathy study (CureGN) is an international longitudinal cohort study of children and adults with four primary glomerular diseases (minimal change disease, focal segmental glomerulosclerosis, membranous nephropathy, and IgA nephropathy). HRQOL is systematically assessed using items from the Patient-Reported Outcomes Measurement Informative System (PROMIS). We assessed the relationship between HRQOL and demographic and clinical variables in 478 children and 1115 adults at the time of enrollment into CureGN. Domains measured by PROMIS items included global assessments of health, mobility, anxiety, fatigue, and sleep impairment, as well as a derived composite measure incorporating all measured domains. Multivariable models were created that explained 7 to 32% of variance in HRQOL. Patient-reported edema consistently had the strongest and most robust association with each measured domain of HRQOL in multivariable analysis (adjusted β [95% CI] for composite PROMIS score in children, -5.2 [-7.1 to -3.4]; for composite PROMIS score in adults, -6.1 [-7.4 to -4.9]). Female sex, weight (particularly obesity), and estimated glomerular filtration rate were also associated with some, but not all, domains of HRQOL. Primary diagnosis, disease duration, and exposure to immunosuppression were not associated with HRQOL after adjustment. Sensitivity analyses and interaction testing demonstrated no significant association between disease duration or immunosuppression and any measured domain of HRQOL. Thus, patient-reported edema has a consistent negative association with HRQOL in patients with primary glomerular diseases, with substantially greater impact than other demographic and clinical variables.
KW - edema
KW - health-related quality of life
KW - patient-reported outcomes
KW - primary glomerular disease
UR - http://www.scopus.com/inward/record.url?scp=85062981898&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85062981898&partnerID=8YFLogxK
U2 - 10.1016/j.kint.2018.12.018
DO - 10.1016/j.kint.2018.12.018
M3 - Article
C2 - 30898342
AN - SCOPUS:85062981898
SN - 0085-2538
VL - 95
SP - 1209
EP - 1224
JO - Kidney International
JF - Kidney International
IS - 5
ER -