Health-related quality of life in glomerular disease

Abstract

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.

Keywords: edema; health-related quality of life; patient-reported outcomes; primary glomerular disease.

Figure 1 |. STROBE flow diagram of included patients.

ESKD, end-stage kidney disease; NEPTUNE, NEPhrotic syndrome sTUdy NEtwork; PROMIS, Patient-Reported Outcomes Measurement Information System; STROBE, Strengthening the Reporting of Observational Studies in Epidemiology

Figure 2 |. Distribution of PROMIS domains in (a) children and (b) adults.

Note that the direction of better versus worse scores differs among domains and is indicated by arrows for each panel. HRQOL, health-related quality of life; PROMIS, Patient-Reported Outcomes Measurement Information System.

Figure 2 |. Distribution of PROMIS domains in (a) children and (b) adults.

Note that the direction of better versus worse scores differs among domains and is indicated by arrows for each panel. HRQOL, health-related quality of life; PROMIS, Patient-Reported Outcomes Measurement Information System.

Figure 3 |. The impact of any edema on PROMIS domain scores at enrollment in the CureGN study.

Plots of (a) children and (b) adults show the adjusted linear regression coefficients (β) from multivariable models, with tails indicating lower and upper confidence limits. For ease of comparison, each β estimate has been plotted as the negative of its absolute value, in which negative numbers indicate a worse patient-reported outcome. The dashed line denotes the minimally important difference from baseline. CI, confidence interval; HRqOl, health-related quality of life; PROMIS, Patient-Reported Outcomes Measurement Information System.

Figure 4 |. Worst edema severity by diagnosis in (a) children and (b) adults.

FSGS, focal segmental glomerulosclerosis; IgAN, IgA nephropathy; IgAV, IgA vasculitis; MCD, minimal change disease; MN, membranous nephropathy.

Figure 5 |. PROMIS domain scores according to worst reported edema severity in (a) children and (b) adults.

PROMIS, Patient-Reported Outcomes Measurement Information System.

Figure 6 |. The impact of corticosteroids on PROMIS domain scores at enrollment in the CureGN study.

Plots of (a) children and (b) adults show the unadjusted linear regression coefficients (β), with tails indicating lower and upper confidence limits. For ease of comparison, each β estimate has been plotted as the negative of its absolute value, in which negative numbers indicate a worse patient-reported outcome. Analyses were based on 420 children (75 treated with corticosteroids vs. 345 not treated with any immunosuppression) and 979 adults (119 treated with corticosteroids vs. 860 not treated with any immunosuppression). CI, confidence interval; HRQOL, health-related quality of life; IST, immunosuppressive therapy; PROMIS, Patient-Reported Outcomes Measurement Information System.