{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,17]],"date-time":"2026-08-17T23:17:25Z","timestamp":1787008645683,"version":"build-2736575974"},"reference-count":25,"publisher":"Oxford University Press (OUP)","issue":"4","license":[{"start":{"date-parts":[[2019,8,6]],"date-time":"2019-08-06T00:00:00Z","timestamp":1565049600000},"content-version":"vor","delay-in-days":1,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"name":"Nephrotic Syndrome Study Network Consortium","award":["U54-DK-083912"],"award-info":[{"award-number":["U54-DK-083912"]}]},{"name":"National Institutes of Health Rare Disease Clinical Research Network"},{"name":"Office of Rare Diseases Research"},{"DOI":"10.13039\/100006108","name":"National Center for Advancing Translational Sciences","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100006108","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000062","name":"NIDDK","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000062","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100007270","name":"University of Michigan","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100007270","id-type":"DOI","asserted-by":"publisher"}]},{"name":"NephCure Kidney International"},{"name":"Halpin Foundation"},{"name":"Charles Woodson Pilot Research Award"},{"name":"University of Michigan Department of Pediatrics"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2020,8,1]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>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).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>FSGS patients \u22658 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\u00a0years. 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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>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 (\u22127.6 points, P\u2009=\u20090.02) and mobility (\u22124.2, P\u2009=\u20090.02), the number of reported symptoms was associated with worse depression (\u22122.7 per symptom, P\u2009=\u20090.009) and anxiety (\u22122.3, P\u2009=\u20090.02) and the number of emergency room (ER) visits in the prior 6\u00a0months was associated with worse mobility (\u22122.8 per visit, P\u2009&amp;lt;\u20090.001) and fatigue (\u22122.4, P\u2009=\u20090.03). 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\u00a0=\u00a00.03).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1093\/ckj\/sfz092","type":"journal-article","created":{"date-parts":[[2019,7,3]],"date-time":"2019-07-03T23:10:09Z","timestamp":1562195409000},"page":"597-606","source":"Crossref","is-referenced-by-count":21,"title":["The longitudinal relationship between patient-reported outcomes and clinical characteristics among patients with focal segmental glomerulosclerosis in the Nephrotic Syndrome Study Network"],"prefix":"10.1093","volume":"13","author":[{"given":"Jonathan P","family":"Troost","sequence":"first","affiliation":[{"name":"Department of Pediatrics, Division of Nephrology, University of Michigan, Ann Arbor, MI, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anne","family":"Waldo","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Division of Nephrology, University of Michigan, Ann Arbor, MI, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Noelle E","family":"Carlozzi","sequence":"additional","affiliation":[{"name":"Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Shannon","family":"Murphy","sequence":"additional","affiliation":[{"name":"University of North Carolina Kidney Center at Chapel Hill, Chapel Hill, NC, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Frank","family":"Modersitzki","sequence":"additional","affiliation":[{"name":"Department of Medicine, Division of Nephrology, New York University Langone Health, New York, NY, 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