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The longitudinal relationship between patient-reported outcomes and clinical characteristics among patients with focal segmental glomerulosclerosis in the Nephrotic Syndrome Study Network. Clinical kidney journal Troost, J. P., Waldo, A. n., Carlozzi, N. E., Murphy, S. n., Modersitzki, F. n., Trachtman, H. n., Nachman, P. H., Reidy, K. J., Selewski, D. T., Herreshoff, E. G., Srivastava, T. n., Gibson, K. L., Derebail, V. K., Lin, J. J., Hingorani, S. n., Fornoni, A. n., Fervenza, F. C., Sambandam, K. n., Athavale, A. M., Kopp, J. B., Reich, H. N., Adler, S. G., Greenbaum, L. A., Dell, K. M., Appel, G. n., Wang, C. S., Sedor, J. n., Kaskel, F. J., Lafayette, R. A., Atkinson, M. A., Lieske, J. C., Sethna, C. B., Kretzler, M. n., Hladunewich, M. A., Lemley, K. V., Brown, E. n., Meyers, K. E., Gadegbeku, C. A., Holzman, L. B., Jefferson, J. A., Tuttle, K. R., Singer, P. n., Hogan, M. C., Cattran, D. C., Barisoni, L. n., Gipson, D. S. 2020; 13 (4): 597–606

Abstract

Understanding the relationship between clinical and patient-reported outcomes (PROs) will help support clinical care and future clinical trial design of novel therapies for focal segmental glomerulosclerosis (FSGS).FSGS patients =8 years of age enrolled in the Nephrotic Syndrome Study Network completed Patient-Reported Outcomes Measurement Information System PRO measures of health-related quality of life (HRQoL) (children: global health, mobility, fatigue, pain interference, depression, anxiety, stress and peer relationships; adults: physical functioning, fatigue, pain interference, sleep impairment, mental health, depression, anxiety and social satisfaction) at baseline and during longitudinal follow-up for a maximum of 5 years. Linear mixed-effects models were used to determine which demographic, clinical and laboratory features were associated with PROs for each of the eight children and eight adults studied.There were 45 children and 114 adult FSGS patients enrolled that had at least one PRO assessment and 519 patient visits. Multivariable analyses among children found that edema was associated with global health (-7.6 points, P?=?0.02) and mobility (-4.2, P?=?0.02), the number of reported symptoms was associated with worse depression (-2.7 per symptom, P?=?0.009) and anxiety (-2.3, P?=?0.02) and the number of emergency room (ER) visits in the prior 6 months was associated with worse mobility (-2.8 per visit, P?

View details for DOI 10.1093/ckj/sfz092

View details for PubMedID 32905199

View details for PubMedCentralID PMC7467600