Jonathan P Troost1, Debbie S Gipson1, Noelle E Carlozzi2, Bryce B Reeve3, Patrick H Nachman4, Rasheed Gbadegesin5, Jichuan Wang6, Frank Modersitzki7, Susan Massengill8, John D Mahan9, Yang Liu10, Howard Trachtman11, Emily G Herreshoff1, Darren A DeWalt12, David T Selewski1. 1. Division of Nephrology, Department of Pediatrics and Communicable Diseases, C. S. Mott Children's Hospital, University of Michigan. 2. Department of Physical Medicine and Rehabilitation, University of Michigan. 3. Department of Health Policy and Management, University of North Carolina at Chapel Hill. 4. Department of Pathology and Laboratory Medicine, School of Medicine, University of North Carolina at Chapel Hill. 5. Department of Pediatrics, Division of Nephrology, Duke University Medical Center. 6. Center for Translational Science, The Children's Research Institute, Children's National Health System. 7. Department of Medicine, Division of Nephrology, New York University Langone Medical Center. 8. Division of Pediatric Nephrology, Levine Children's Hospital. 9. Department of Pediatrics, Division of Pediatric Nephrology, Nationwide Children's Hospital, The Ohio State University College of Medicine. 10. School of Social Sciences, Humanities and Arts, University of California, Merced. 11. Department of Pediatrics, Division of Nephrology, New York University Langone Medical Center. 12. Division of General Medicine & Clinical Epidemiology, Department of Medicine, University of North Carolina at Chapel Hill.
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).
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).
Authors: David T Selewski; Jonathan P Troost; Susan F Massengill; Rasheed A Gbadegesin; Larry A Greenbaum; Ibrahim F Shatat; Yi Cai; Gaurav Kapur; Diane Hebert; Michael J Somers; Howard Trachtman; Priya Pais; Michael E Seifert; Jens Goebel; Christine B Sethna; John D Mahan; Heather E Gross; Emily Herreshoff; Yang Liu; Peter X Song; Bryce B Reeve; Darren A DeWalt; Debbie S Gipson Journal: Pediatr Nephrol Date: 2015-03-18 Impact factor: 3.714
Authors: Nan E Rothrock; Ron D Hays; Karen Spritzer; Susan E Yount; William Riley; David Cella Journal: J Clin Epidemiol Date: 2010-08-05 Impact factor: 6.437
Authors: Lynne I Wagner; Julian Schink; Michael Bass; Shalini Patel; Maria Varela Diaz; Nan Rothrock; Timothy Pearman; Richard Gershon; Frank J Penedo; Steven Rosen; David Cella Journal: Cancer Date: 2014-11-06 Impact factor: 6.860
Authors: Darren A DeWalt; Heather E Gross; Debbie S Gipson; David T Selewski; Esi Morgan DeWitt; Carlton D Dampier; Pamela S Hinds; I-Chan Huang; David Thissen; James W Varni Journal: Qual Life Res Date: 2015-02-26 Impact factor: 4.147
Authors: Debbie S Gipson; Susan F Massengill; Lynne Yao; Shashi Nagaraj; William E Smoyer; John D Mahan; Delbert Wigfall; Paul Miles; Leslie Powell; Jen-Jar Lin; Howard Trachtman; Larry A Greenbaum Journal: Pediatrics Date: 2009-07-27 Impact factor: 7.124
Authors: Vivek Nagaraja; Constance Mara; Puja P Khanna; Rajaie Namas; Amber Young; David A Fox; Timothy Laing; William J McCune; Carol Dodge; Debra Rizzo; Maha Almackenzie; Dinesh Khanna Journal: Qual Life Res Date: 2017-10-05 Impact factor: 4.147
Authors: Noelle E Carlozzi; Susan F Massengill; Howard Trachtman; Liron Walsh; Neena Singhal; Joseph M LaVigne; Jennifer A Miner; Hailey E Desmond; Christian Lynam; Debbie S Gipson Journal: Kidney Med Date: 2021-04-20
Authors: 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; Tarak Srivastava; Keisha L Gibson; Vimal K Derebail; Jen Jar Lin; Sangeeta Hingorani; Alessia Fornoni; Fernando C Fervenza; Kamalanathan Sambandam; Ambarish M Athavale; Jeffrey B Kopp; Heather N Reich; Sharon G Adler; Larry A Greenbaum; Katherine M Dell; Gerald Appel; Chia-Shi Wang; John Sedor; Frederick J Kaskel; Richard A Lafayette; Meredith A Atkinson; John C Lieske; Christine B Sethna; Matthias Kretzler; Michelle A Hladunewich; Kevin V Lemley; Elizabeth Brown; Kevin E Meyers; Crystal A Gadegbeku; Lawrence B Holzman; Jonathan Ashley Jefferson; Katherine R Tuttle; Pamela Singer; Marie C Hogan; Daniel C Cattran; Laura Barisoni; Debbie S Gipson Journal: Clin Kidney J Date: 2019-08-05