Evidence map›Paper›PMID 32905199›Full record

ArticleClinical kidney journal2020

The longitudinal relationship between patient-reported outcomes and clinical characteristics among patients with focal segmental glomerulosclerosis in the Nephrotic Syndrome Study Network.

Jonathan P Troost, Anne Waldo, Noelle E Carlozzi, Shannon Murphy, Frank Modersitzki, Howard Trachtman, Patrick H Nachman, Kimberly J Reidy, David T Selewski, Emily G Herreshoff and 37 more

Registry-linked trialOpen access · goldAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Clinical kidney journal, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT06664814 (An Open-Label Phase 2 Study of N-Acetyl-D-Mannosamine), which is not on this map. Cited by 14 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
14citing papers in PubMed, 1 pooled it
1.6field-weighted citation impact, top 17% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT06664814 phase2recruitingnot on this mapstarted 2026, after this paper: background citation

An Open-Label Phase 2 Study of N-Acetyl-D-Mannosamine (ManNAc) in Subjects With Podocyte Diseases

TypeinterventionalSponsorNational Human Genome Research Institute (NHGRI)Ran2026 to 2027Enrolled30ConditionsFocal Segmental GlomerulosclerosisArmsManNAc
3 · Its place in the literature

Who cites it

14 citing papers in PubMed, 1 synthesis or guideline pooled it, 20 citations in OpenAlex.

  1. Pooled it
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  5. Patient-Reported Outcomes Over 24 Months in Pediatric CKD: Findings From the MyKidneyHealth Cohort Study.American journal of kidney diseases : the official journal of the National Kidney Foundation · 2023
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

47 authors at 20 institutions in 2 countries.

Jonathan P TroostDepartment of Pediatrics, Division of Nephrology, University of Michigan, Ann Arbor, MI, USA.
Anne WaldoDepartment of Pediatrics, Division of Nephrology, University of Michigan, Ann Arbor, MI, USA.
Noelle E CarlozziDepartment of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA.
Shannon MurphyUniversity of North Carolina Kidney Center at Chapel Hill, Chapel Hill, NC, USA.
Frank ModersitzkiDepartment of Medicine, Division of Nephrology, New York University Langone Health, New York, NY, USA.
Howard TrachtmanDepartment of Pediatrics, Division of Nephrology, New York University Langone Health, New York, NY, USA.
Patrick H NachmanDivision of Renal Diseases and Hypertension, University of Minnesota, Minneapolis, MN, USA.
Kimberly J ReidyDepartment of Pediatrics, Division of Nephrology, Albert Einstein College of Medicine, Montefiore Medical Center, New York, NY, USA.
David T SelewskiDepartment of Pediatrics, Division of Nephrology, Medical University of South Carolina, Charleston, SC, USA.
Emily G HerreshoffDepartment of Pediatrics, Division of Nephrology, University of Michigan, Ann Arbor, MI, USA.
Tarak SrivastavaSection of Nephrology, Children's Mercy Hospital and University of Missouri at Kansas City, Kansas City, MO, USA.
Keisha L GibsonUniversity of North Carolina Kidney Center at Chapel Hill, Chapel Hill, NC, USA.
Vimal K DerebailUniversity of North Carolina Kidney Center at Chapel Hill, Chapel Hill, NC, USA.
Jen Jar LinDivision of Pediatric Nephrology, Brenner Children's Hospital, Wake Forest University, Winston-Salem, NC, USA.
Sangeeta HingoraniDepartment of Pediatrics, Division of Nephrology, Seattle Children's Hospital and University of Washington, Seattle, WA, USA.
Alessia FornoniDepartment of Medicine, Katz Family Division of Nephrology and Hypertension, University of Miami Miller School of Medicine, Miami, FL, USA.
Fernando C FervenzaDivision of Nephrology and Hypertension, Mayo Clinic, Rochester, MN, USA.
Kamalanathan SambandamDepartment of Internal Medicine, Division of Nephrology, UT Southwestern Medical Center, Dallas, TX, USA.
Ambarish M AthavaleDivision of Nephrology, Core Faculty, Internal Medicine Residency Program, John H. Stroger Jr. Hospital of Cook County, Chicago, IL, USA.
Jeffrey B KoppKidney Disease Section, National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health, Bethesda, MD, USA.
Heather N ReichDepartment of Medicine, Division of Nephrology, Sunnybrook Health Sciences Centre, University of Toronto, Toronto, ON, Canada.
Sharon G AdlerDivision of Nephrology and Hypertension, Los Angeles Biomedical Research Institute at Harbor-University of California Los Angeles Medical Center, Torrance, CA, USA.
Larry A GreenbaumDepartment of Pediatrics, Division of Pediatric Nephrology, Emory University School of Medicine and Children's Healthcare of Atlanta, Atlanta, GA, USA.
Katherine M DellCenter for Pediatric Nephrology, Cleveland Clinic Children's and Case Western Reserve University, Cleveland, OH, USA.
Gerald AppelDivision of Nephrology, Columbia University Medical Center, New York, NY, USA.
Chia-Shi WangDepartment of Pediatrics, Division of Pediatric Nephrology, Emory University School of Medicine and Children's Healthcare of Atlanta, Atlanta, GA, USA.ORCID 0000-0001-6941-0057
John SedorDepartment of Nephrology, Cleveland Clinic, Cleveland, OH, USA.
Frederick J KaskelDepartment of Pediatrics, Division of Nephrology, Albert Einstein College of Medicine, Montefiore Medical Center, New York, NY, USA.
Richard A LafayetteDepartment of Medicine, Division of Nephrology, Stanford University, Stanford, CA, USA.
Meredith A AtkinsonDivision of Pediatric Nephrology, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
John C LieskeDivision of Nephrology and Hypertension, Mayo Clinic, Rochester, MN, USA.
Christine B SethnaPediatric Nephrology, Cohen Children's Medical Center of New York, Zucker School of Medicine at Hofstra/Northwell, Hempstead, NY, USA.
Matthias KretzlerDepartment of Internal Medicine, Division of Nephrology, University of Michigan, Ann Arbor, MI, USA.
Michelle A HladunewichDepartment of Medicine, Division of Nephrology, Sunnybrook Health Sciences Centre, University of Toronto, Toronto, ON, Canada.
Kevin V LemleyDivision of Nephrology, Children's Hospital Los Angeles, Los Angeles, CA, USA.
Elizabeth BrownDepartment of Pediatrics, Division of Nephrology, University of Texas Southwestern Medical Center, Dallas, TX, USA.
Kevin E MeyersDepartment of Pediatrics, Division of Nephrology, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
Crystal A GadegbekuDivision of Nephrology, Temple University School of Medicine, Philadelphia, PA, USA.
Lawrence B HolzmanRenal-Electrolyte and Hypertension Division, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
Jonathan Ashley JeffersonDepartment of Medicine, Division of Nephrology, University of Washington, Seattle, WA, USA.
Katherine R TuttleProvidence Health Care, Providence Medical Research Center, Spokane, WA, USA.
Pamela SingerPediatric Nephrology, Cohen Children's Medical Center of New York, Zucker School of Medicine at Hofstra/Northwell, Hempstead, NY, USA.
Marie C HoganDivision of Nephrology and Hypertension, Mayo Clinic, Rochester, MN, USA.
Daniel C CattranDepartment of Medicine, Division of Nephrology, University Health Network, University of Toronto, Toronto, ON, Canada.
Laura BarisoniDepartment of Pathology, Division of Nephrology, Duke University, Durham, NC, USA.
Debbie S GipsonDepartment of Pediatrics, Division of Nephrology, University of Michigan, Ann Arbor, MI, USA.
Nephrotic Syndrome Study Network
University of Michigan · USUniversity of Washington · USDuke University · USMayo Clinic · USSunnybrook Health Science Centre · CAAlbert Einstein College of Medicine · USCleveland Clinic · USEmory University · USNYU Langone Health · USUniversity of Pennsylvania · USChildren's Hospital of Los Angeles · USChildren's Hospital of Philadelphia · USCohen Children's Medical Center · USChildren's Mercy Hospital · USJohn H. Stroger, Jr. Hospital of Cook County · USNational Institutes of Health · USSeattle Children's Hospital · USUniversity Health Network · CAColumbia University Irving Medical Center · USTemple University · US

Funding

A Novel Mobile Application for Childhood Nephrotic Syndrome ManagementK23DK118189 · NIDDK · EMORY UNIVERSITY · PI WANG, CHIA-SHI · 2019 to 2023
$941k
NIDDK NIH HHS K23 DK118189
6 · The paper itself

Abstract

backgroundUnderstanding 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).

methodsFSGS 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.

resultsThere 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

conclusionsPROs 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.

Indexed as

focal segmental glomerulosclerosisnephrotic syndromepatient-reported outcomesPROMISprospective cohort studyproteinuriaremission

Identifiers

PMID32905199
PMCPMC7467600
OpenAlexW3082278640

What OpenQuestion holds

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LicenceCC BY-NC
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Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.