Using PROMIS® to create clinically meaningful profiles of nephrotic syndrome patients

Jonathan P. Troost, Debbie S. Gipson, Noelle E. Carlozzi, Bryce B. Reeve, Patrick H. Nachman, Rasheed Gbadegesin, Jichuan Wang, Frank Modersitzki, Susan Massengill, John D. Mahan, Yang Liu, Howard Trachtman, Emily G. Herreshoff, Darren A. Dewalt, David T. Selewski

Research output: Contribution to journalArticlepeer-review

11 Scopus citations


OBJECTIVE: Nephrotic syndrome (NS) is a kidney disease known to adversely impact health-related quality of life (HRQOL). Patient-reported outcome (PRO) measures are commonly used to characterize HRQOL and the patient disease experience. This study aims to improve the interpretability and clinical utility of the Patient-Reported Outcomes Measurement Information System® (PROMIS®) by identifying distinct meaningful HRQOL profiles in children and adults with NS.

METHOD: Patients were from 2 prospective NS cohort studies (PROMIS-II®: 121 children; NEPTUNE: 40 children and 219 adults) with data from 6 PROMIS® domains. Latent Profile Analysis was used to identify subgroups of patients based on PROMIS® score patterns. A 3-step analysis of latent profile predictors was used to determine how clinical parameters predicted HRQOL profile membership.

RESULTS: We identified 3 HRQOL profiles (Good, Average, and Poor) with strong indicators of membership classification (entropy >0.86). Complete proteinuria remission, reduction in symptoms, and shorter disease duration, were significant predictors of better HRQOL profile membership.

CONCLUSIONS: Patients with NS can be classified by HRQOL into clinically meaningful categories. Integrating this approach into clinic may help in the identification of individuals with poor HRQOL will help clinicians better manage their symptoms and researchers study the causes and possible interventions for these patients. PROMIS® HRQOL profiles were reproducible in replication cohorts. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Original languageEnglish (US)
Pages (from-to)410-421
Number of pages12
JournalHealth Psychology
Issue number5
StatePublished - May 2019

Bibliographical note

Funding Information:
The Nephrotic Syndrome Study Network Consortium (NEPTUNE) U54-DK-083912 is a part of the National Center for Advancing Translational Sciences (NCATS) Rare Disease Clinical Research Network (RDCRN), supported through a collaboration between the Office of Rare Diseases Research (ORDR), NCATS, and the National Institute of Diabetes, Digestive, and Kidney Diseases. RDCRN is an initiative of ORDR, NCATS. Additional funding and/or programmatic support for this project has also been provided by the University of Michigan, NephCure Kidney International, and the Halpin Foundation.

Funding Information:
PROMIS® was funded with cooperative agreements from the National Institutes of Health (NIH) Common Fund Initiative (Northwestern University, PI: David Cella, U54AR057951, U01AR052177; Northwestern University, PI: Richard C. Gershon, U54AR057943; American Institutes for Research, PI: Susan (San) D. Keller, U54AR057926; State University of New York, Stony Brook, PIs: Joan E. Broderick, and Arthur A. Stone, U01AR057948, U01AR052170; University of Washington, Seattle, PIs: Heidi M. Crane, Paul K. Crane, MPH, and Donald L. Patrick, U01AR057954; University of Washington, Seattle, PI: Dagmar Amtmann, U01AR052171; University of North Carolina at Chapel Hill, PI: Harry A. Guess, (deceased), Darren A. DeWalt, U01AR052181; Children’s Hospital of Philadelphia, PI: Christopher B. Forrest, U01AR057956; Stanford University, PI: James F. Fries, U01AR052158; Boston University, PIs: Alan Jette, Stephen M. Haley, (deceased), and David Scott Tulsky, (University of Michigan), U01AR057929; University of California, Los Angeles, PIs: Dinesh Khanna, (University of Michigan) and Brennan Spiegel,

Publisher Copyright:
© 2019 American Psychological Association.


  • Latent profile analysis
  • Nephrology
  • Nephrotic syndrome
  • Pediatrics
  • Quality of life
  • Nephrotic Syndrome/epidemiology
  • Humans
  • Male
  • Quality of Life/psychology
  • Young Adult
  • Adolescent
  • Adult
  • Female
  • Child
  • Longitudinal Studies
  • Cohort Studies
  • Patient Reported Outcome Measures

PubMed: MeSH publication types

  • Journal Article


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