Open Access Research

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

Debbie S Gipson1, David T Selewski1*, Susan F Massengill2, Larysa Wickman1, Kassandra L Messer3, Emily Herreshoff1, Corinna Bowers4, Maria E Ferris5, John D Mahan4, Larry A Greenbaum6, Jackie MacHardy7, Gaurav Kapur8, Deepa H Chand9, Jens Goebel10, Gina Marie Barletta11, Denis Geary12, David B Kershaw1, Cynthia G Pan13, Rasheed Gbadegesin14, Guillermo Hidalgo15, Jerome C Lane16, Jeffrey D Leiser17, Brett W Plattner18, Peter X Song3, David Thissen19, Yang Liu19, Heather E Gross7 and Darren A DeWalt20

Author Affiliations

1 Division of Nephrology, Department of Pediatrics and Communicable Diseases, C.S. Mott Children’s Hospital, University of Michigan, 1500 E Medical Center Drive, SPC5297, Ann Arbor, MI, 48109-5297, USA

2 Levine Children’s Hospital, Division of Pediatric Nephrology, Charlotte, NC, USA

3 Department of Biostatistics, School of Public Health, University of Michigan, Ann Arbor, MI, USA

4 Nationwide Children’s Hospital, The Ohio State University, College of Medicine, Columbus, OH, USA

5 Pediatric Nephrology, UNC Kidney Center, The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA

6 Emory University and Children’s Healthcare of Atlanta, Atlanta, GA, USA

7 University of North Carolina, Chapel Hill, NC, USA

8 Pediatric Nephrology and Hypertension Division, Children’s Hospital of Michigan, Detroit, MI, USA

9 Rush Children’s Hospital, Chicago, IL, USA

10 Division of Nephrology and Hypertension, Cincinnati Children’s Hospital, Cincinnati, OH, USA

11 Phoenix Children’s Hospital, Phoenix, AZ, USA

12 Division of Nephrology, The Hospital for Sick Children and University of Toronto, Toronto, ON, USA

13 Medical College of Wisconsin, Milwaukee, WI, USA

14 Department of Pediatrics and Center for Human Genetics, Duke University Medical Center, Durham, NC, USA

15 East Carolina University, Greenville, NC, USA

16 Feinberg School of Medicine, Northwestern University and Anne & Robert Lurie Children’s Hospital of Chicago, Chicago, IL, USA

17 Section of Pediatric Nephrology and Hypertension, Riley Hospital for Children at Indiana University Health, Indianapolis, IN, USA

18 Division of Nephrology, Department of Internal Medicine, University of Michigan, Ann Arbor, MI, USA

19 Department of Psychology, The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA

20 Cecil G. Sheps Center for Health Services Research, Division of General Internal Medicine, University of North Carolina, Chapel Hill, NC, USA

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Health and Quality of Life Outcomes 2013, 11:30  doi:10.1186/1477-7525-11-30

Published: 4 March 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.

Keywords:
Patient reported outcomes; Quality of life; Nephrotic syndrome; Pediatrics