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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.

Publication ,  Journal Article
Troost, JP; Waldo, A; Carlozzi, NE; Murphy, S; Modersitzki, F; Trachtman, H; Nachman, PH; Reidy, KJ; Selewski, DT; Herreshoff, EG; Gibson, KL ...
Published in: Clin Kidney J
August 2020

BACKGROUND: 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). METHODS: 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. RESULTS: 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 < 0.001) and fatigue (-2.4, P = 0.03). Multivariable analyses among adults found the number of reported symptoms was associated with worse function in all eight PROMIS measures and the number of ER visits was associated with worse fatigue, pain interference, sleep impairment, depression, anxiety and social satisfaction. Laboratory markers of disease severity (i.e. proteinuria, estimated glomerular filtration rate and serum albumin) did not predict PRO in multivariable analyses, with the single exception of complete remission and better pain interference scores among children (+9.3, P = 0.03). CONCLUSIONS: PROs provide important information about HRQoL for persons with FSGS that is not captured solely by the examination of laboratory-based markers of disease. However, it is critical that instruments capture the patient experience and FSGS clinical trials may benefit from a disease-specific instrument more sensitive to within-patient changes.

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Published In

Clin Kidney J

DOI

ISSN

2048-8505

Publication Date

August 2020

Volume

13

Issue

4

Start / End Page

597 / 606

Location

England

Related Subject Headings

  • 3202 Clinical sciences
 

Citation

APA
Chicago
ICMJE
MLA
NLM
Troost, J. P., Waldo, A., Carlozzi, N. E., Murphy, S., Modersitzki, F., Trachtman, H., … Nephrotic Syndrome Study Network, . (2020). The longitudinal relationship between patient-reported outcomes and clinical characteristics among patients with focal segmental glomerulosclerosis in the Nephrotic Syndrome Study Network. Clin Kidney J, 13(4), 597–606. https://doi.org/10.1093/ckj/sfz092
Troost, Jonathan P., Anne Waldo, Noelle E. Carlozzi, Shannon Murphy, Frank Modersitzki, Howard Trachtman, Patrick H. Nachman, et al. “The longitudinal relationship between patient-reported outcomes and clinical characteristics among patients with focal segmental glomerulosclerosis in the Nephrotic Syndrome Study Network.Clin Kidney J 13, no. 4 (August 2020): 597–606. https://doi.org/10.1093/ckj/sfz092.
Troost JP, Waldo A, Carlozzi NE, Murphy S, Modersitzki F, Trachtman H, Nachman PH, Reidy KJ, Selewski DT, Herreshoff EG, Srivastava T, Gibson KL, Derebail VK, Lin JJ, Hingorani S, Fornoni A, Fervenza FC, Sambandam K, Athavale AM, Kopp JB, Reich HN, Adler SG, Greenbaum LA, Dell KM, Appel G, Wang C-S, Sedor J, Kaskel FJ, Lafayette RA, Atkinson MA, Lieske JC, Sethna CB, Kretzler M, Hladunewich MA, Lemley KV, Brown E, Meyers KE, Gadegbeku CA, Holzman LB, Jefferson JA, Tuttle KR, Singer P, Hogan MC, Cattran DC, Barisoni L, Gipson DS, Nephrotic Syndrome Study Network. The longitudinal relationship between patient-reported outcomes and clinical characteristics among patients with focal segmental glomerulosclerosis in the Nephrotic Syndrome Study Network. Clin Kidney J. 2020 Aug;13(4):597–606.

Published In

Clin Kidney J

DOI

ISSN

2048-8505

Publication Date

August 2020

Volume

13

Issue

4

Start / End Page

597 / 606

Location

England

Related Subject Headings

  • 3202 Clinical sciences