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Abstract: SA-PO396

Changes in Patient-Reported Outcomes and Glomerular Disease Activity: CureGN

Session Information

Category: Glomerular Diseases

  • 1203 Glomerular Diseases: Clinical, Outcomes, and Trials


  • Murphy, Shannon L., University of North Carolina, Chapel Hill, North Carolina, United States
  • Mahan, John D., Nationwide Children's Hospital, Columbus, Ohio, United States
  • Troost, Jonathan P., University of Michigan, Ann Arbor, Michigan, United States
  • Srivastava, Tarak, Childrens's Mercy Hospital, Kansas City, Missouri, United States
  • Kogon, Amy, Children's Hospital of Philadelphia, Wynnewood, Pennsylvania, United States
  • Cai, Yi, Helen DeVos Children's Hospital, Grand Rapids, Michigan, United States
  • Davis, T. Keefe, Washington University, St. Louis, Missouri, United States
  • Fernandez, Hilda E., NYP-CUMC, New York, New York, United States
  • Fornoni, Alessia, University of Miami, Miami, Florida, United States
  • Gbadegesin, Rasheed A., Duke University Medical Center, Durham, North Carolina, United States
  • Herreshoff, Emily G., University of Michigan, Ann Arbor, Michigan, United States
  • Canetta, Pietro A., NYP-CUMC, New York, New York, United States
  • Nachman, Patrick H., University of Minnesota, Minneapolis, Minnesota, United States
  • Reeve, Bryce B., University of North Carolina, Chapel Hill, North Carolina, United States
  • Selewski, David T., University of Michigan, Ann Arbor, Michigan, United States
  • Sethna, Christine B., Cohen Children's Medical Center of NY, New Hyde Park, New York, United States
  • Wang, Chia- Shi, Emory University, Atlanta, Georgia, United States
  • Bartosh, Sharon M., University of Wisconsin Children's Hospital, Madison, Wisconsin, United States
  • Gipson, Debbie S., University of Michigan Mott Children's Hospital, Ann Arbor, Michigan, United States
  • Tuttle, Katherine R., University of Washington School of Medicine, Spokane, Washington, United States

Group or Team Name

  • On Behalf of the CureGN Consortium

Prior cross sectional studies suggest that health-related quality of life (HRQOL) is worse in patients with active glomerular disease compared with inactive patients. This analysis was conducted to assess changes in longitudinal HRQOL with changing disease status.


Longitudinal data were collected in CureGN, a cohort of patients with minimal change disease, focal segmental glomerulosclerosis, membranous nephropathy, IgA vasculitis or IgA nephropathy. HRQOL was assessed at enrollment and at visits ranging from 1 - 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 was measured in adults. Linear mixed effects models were used to evaluate HRQOL responsiveness to changes in disease activity.


416 Children and 1,011 Adults with PROMIS scores were included in the analysis. Edema was associated with all PROMIS domains other than Adult Mental Health (Figure). For example, children with edema resolution had improved Mobility (change +4.1; 95% CI +1.9 to +6.3), while those with edema onset had worse Mobility (change= -2.8 CI=-5.2 to -0.4). Serum albumin also associated with HRQOL for Child Global Health, Child Mobility, and all Adult Domains (effect sizes of +0.8 to +2.1 points per g/dL, p<0.05).


HRQOL, as measured by PROMIS, was responsive to changes in glomerular disease patient edema and serum albumin levels with score changes ranging from 0.3 - 1.3 times the PROMIS minimally important difference of 3. Future studies may reveal a glomerular disease specific PRO instrument to be more sensitive to within patient changes in disease status.


  • NIDDK Support