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


ABSTRACT: 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).

SUBMITTER: Troost JP 

PROVIDER: S-EPMC6499490 | biostudies-literature | 2019 May

REPOSITORIES: biostudies-literature

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

Troost Jonathan P JP   Gipson Debbie S DS   Carlozzi Noelle E NE   Reeve Bryce B BB   Nachman Patrick H PH   Gbadegesin Rasheed R   Wang Jichuan J   Modersitzki Frank F   Massengill Susan S   Mahan John D JD   Liu Yang Y   Trachtman Howard H   Herreshoff Emily G EG   DeWalt Darren A DA   Selewski David T DT  

Health psychology : official journal of the Division of Health Psychology, American Psychological Association 20190501 5


<h4>Objective</h4>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.<h4>Method</h4>Patients were fr  ...[more]

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