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Open Access 01-12-2013 | Research

Gaining the PROMIS perspective from children with nephrotic syndrome: a Midwest pediatric nephrology consortium study

Authors: Debbie S Gipson, David T Selewski, Susan F Massengill, Larysa Wickman, Kassandra L Messer, Emily Herreshoff, Corinna Bowers, Maria E Ferris, John D Mahan, Larry A Greenbaum, Jackie MacHardy, Gaurav Kapur, Deepa H Chand, Jens Goebel, Gina Marie Barletta, Denis Geary, David B Kershaw, Cynthia G Pan, Rasheed Gbadegesin, Guillermo Hidalgo, Jerome C Lane, Jeffrey D Leiser, Brett W Plattner, Peter X Song, David Thissen, Yang Liu, Heather E Gross, Darren A DeWalt

Published in: Health and Quality of Life Outcomes | Issue 1/2013

Abstract

Background and objectives

Nephrotic syndrome (NS) represents a common disease in pediatric nephrology typified by a relapsing and remitting course and characterized by the presence of edema that can significantly affect the health-related quality of life in children and adolescents. The PROMIS pediatric measures were constructed to be publically available, efficient, precise, and valid across a variety of diseases to assess patient reports of symptoms and quality of life. This study was designed to evaluate the ability of children and adolescents with NS to complete the PROMIS assessment via computer and to initiate validity assessments of the short forms and full item banks in pediatric NS. Successful measurement of patient reported outcomes will contribute to our understanding of the impact of NS on children and adolescents.

Design

This cross-sectional study included 151 children and adolescents 8-17 years old with NS from 16 participating institutions in North America. The children completed the PROMIS pediatric depression, anxiety, social-peer relationships, pain interference, fatigue, mobility and upper extremity functioning measures using a web-based interface. Responses were compared between patients experiencing active NS (n = 53) defined by the presence of edema and patients with inactive NS (n = 96) defined by the absence of edema.

Results

All 151 children and adolescents were successfully able to complete the PROMIS assessment via computer. As hypothesized, the children and adolescents with active NS were significantly different on 4 self-reported measures (anxiety, pain interference, fatigue, and mobility). Depression, peer relationships, and upper extremity functioning were not different between children with active vs. inactive NS. Multivariate analysis showed that the PROMIS instruments remained sensitive to NS disease activity after adjusting for demographic characteristics.

Conclusions

Children and adolescents with NS were able to successfully complete the PROMIS instrument using a web-based interface. The computer based pediatric PROMIS measurement effectively discriminated between children and adolescents with active and inactive NS. The domain scores found in this study are consistent with previous reports investigating the health-related quality of life in children and adolescents with NS. This study establishes known-group validity and feasibility for PROMIS pediatric measures in children and adolescents with NS.

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Title: Gaining the PROMIS perspective from children with nephrotic syndrome: a Midwest pediatric nephrology consortium study
Authors: Debbie S Gipson
David T Selewski
Susan F Massengill
Larysa Wickman
Kassandra L Messer
Emily Herreshoff
Corinna Bowers
Maria E Ferris
John D Mahan
Larry A Greenbaum
Jackie MacHardy
Gaurav Kapur
Deepa H Chand
Jens Goebel
Gina Marie Barletta
Denis Geary
David B Kershaw
Cynthia G Pan
Rasheed Gbadegesin
Guillermo Hidalgo
Jerome C Lane
Jeffrey D Leiser
Brett W Plattner
Peter X Song
David Thissen
Yang Liu
Heather E Gross
Darren A DeWalt
Publication date: 01-12-2013
Publisher: BioMed Central
Published in: Health and Quality of Life Outcomes / Issue 1/2013
Electronic ISSN: 1477-7525
DOI: https://doi.org/10.1186/1477-7525-11-30

At a glance: The STEP trials

Springer Medicine

Gaining the PROMIS perspective from children with nephrotic syndrome: a Midwest pediatric nephrology consortium study

Abstract

Background and objectives

Design

Results

Conclusions

At a glance: The STEP trials

Springer Medicine

Abstract

Background and objectives

Design

Results

Conclusions

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