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. 2020 Jul 23;5(10):1679-1689.
doi: 10.1016/j.ekir.2020.06.041. eCollection 2020 Oct.

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

Shannon L Murphy  1 , John D Mahan  2 , Jonathan P Troost  3 , Tarak Srivastava  4 , Amy J Kogon  5 , Yi Cai  6 , T Keefe Davis  7 , Hilda Fernandez  8 , Alessia Fornoni  9 , Rasheed A Gbadegesin  10 , Emily Herreshoff  11 , Pietro A Canetta  8 , Patrick H Nachman  12 , Bryce B Reeve  13 , David T Selewski  11 , Christine B Sethna  14 , Chia-Shi Wang  15 , Sharon M Bartosh  16 , Debbie S Gipson  11 , Katherine R Tuttle  17 ; CureGN Consortium
Collaborators, Affiliations

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

Shannon L Murphy et al. Kidney Int Rep. .

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.

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Figures

Figure 1
Figure 1
CONSORT flow diagram of included patients. Data as of September 5, 2018. ∗Could provide more than 1 reason. PRO, patient-reported outcomes.
Figure 2
Figure 2
Change in health-related quality of life (HRQOL) over time: results of linear mixed effects models by measure. Fatigue and anxiety are linked to be on the same scale for children and adults. (a) ∗95% confidence intervals are shown as dashed lines. (b) Due to the overlapping estimates, confidence intervals were suppressed to aid visualization. Patient-Reported Outcomes Measurement Information System (PROMIS) scores were rescored so that higher numbers reflect better HRQOL.
Figure 3
Figure 3
Linear mixed effects models of change in patient-reported outcomes since last visit by edema. CI, confidence interval; PROMIS, Patient-Reported Outcomes Measurement Information System.
See this image and copyright information in PMC

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