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

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Creator
  • Leiser, Jeffrey D
    • Other Affiliation: Section of Pediatric Nephrology and Hypertension, Riley Hospital for Children at Indiana University Health, Indianapolis, IN, USA
  • Liu, Yang
    • Affiliation: College of Arts and Sciences, Department of Psychology and Neuroscience
  • Herreshoff, Emily
    • Other Affiliation: 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
  • Pan, Cynthia G
    • Other Affiliation: Medical College of Wisconsin, Milwaukee, WI, USA
  • Selewski, David T
    • Other Affiliation: 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
  • Kershaw, David B
    • Other Affiliation: 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
  • Chand, Deepa H
    • Other Affiliation: Rush Children’s Hospital, Chicago, IL, USA
  • Gross, Heather E
  • MacHardy, Jacqueline
  • Goebel, Jens
    • Other Affiliation: Division of Nephrology and Hypertension, Cincinnati Children’s Hospital, Cincinnati, OH, USA
  • Gbadegesin, Rasheed
    • Other Affiliation: Department of Pediatrics and Center for Human Genetics, Duke University Medical Center, Durham, NC, USA
  • Wickman, Larysa
    • Other Affiliation: 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
  • Corinna, Bowers
    • Other Affiliation: Nationwide Children’s Hospital, The Ohio State University, College of Medicine, Columbus, OH, USA
  • Song, Peter X
    • Other Affiliation: Department of Biostatistics, School of Public Health, University of Michigan, Ann Arbor, MI, USA
  • DeWalt, Darren A
    • Affiliation: Cecil G. Sheps Center for Health Services Research, School of Medicine
  • Kapur, Gaurav
    • Other Affiliation: Pediatric Nephrology and Hypertension Division, Children’s Hospital of Michigan, Detroit, MI, USA
  • Geary, Denis
    • Other Affiliation: Division of Nephrology, The Hospital for Sick Children and University of Toronto, Toronto, ON, USA
  • Gipson, Debbie S
    • Other Affiliation: 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
  • Ferris, Maria
    • Affiliation: School of Medicine, Department of Pediatrics, UNC Kidney Center, Department of Medicine
  • Messer, Kassandra L
    • Other Affiliation: Department of Biostatistics, School of Public Health, University of Michigan, Ann Arbor, MI, USA
  • Massengill, Susan F
    • Other Affiliation: Levine Children’s Hospital, Division of Pediatric Nephrology, Charlotte, NC, USA
  • Barletta, Gina
    • Other Affiliation: Phoenix Children’s Hospital, Phoenix, AZ, USA
  • Greenbaum, Larry A
    • Other Affiliation: Emory University and Children’s Healthcare of Atlanta, Atlanta, GA, USA
  • Plattner, Brett W
    • Other Affiliation: Division of Nephrology, Department of Internal Medicine, University of Michigan, Ann Arbor, MI, USA
  • Mahan, John D
    • Other Affiliation: Nationwide Children’s Hospital, The Ohio State University, College of Medicine, Columbus, OH, USA
  • Hidalgo, Guillermo
    • Other Affiliation: East Carolina University, Greenville, NC, USA
  • Thissen, David
    • Affiliation: College of Arts and Sciences, Department of Psychology and Neuroscience
  • Lane, Jerome C
    • Other Affiliation: Feinberg School of Medicine, Northwestern University and Anne & Robert Lurie Children’s Hospital of Chicago, Chicago, IL, USA
Abstract
  • 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.
Date of publication
Identifier
  • doi:10.1186/1477-7525-11-30
Resource type
  • Article
Rights statement
  • In Copyright
Rights holder
  • Debbie S Gipson et al.; licensee BioMed Central Ltd.
License
Journal title
  • Health and Quality of Life Outcomes
Journal volume
  • 11
Journal issue
  • 1
Page start
  • 30
Language
  • English
Is the article or chapter peer-reviewed?
  • Yes
ISSN
  • 1477-7525
Bibliographic citation
  • Health and Quality of Life Outcomes. 2013 Mar 04;11(1):30
Access
  • Open Access
Publisher
  • BioMed Central Ltd
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