Gaining the PROMIS perspective from children with nephrotic syndrome: a Midwest pediatric nephrology consortium study
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Gipson, Debbie S, et al. Gaining the Promis Perspective From Children with Nephrotic Syndrome: a Midwest Pediatric Nephrology Consortium Study. BioMed Central Ltd, 2013. https://doi.org/10.17615/nmtc-tj72APA
Gipson, D., Selewski, D., Massengill, S., Wickman, L., Messer, K., Herreshoff, E., Corinna, B., Ferris, M., Mahan, J., Greenbaum, L., Mac Hardy, J., Kapur, G., Chand, D., Goebel, J., Barletta, G., Geary, D., Kershaw, D., Pan, C., Gbadegesin, R., Hidalgo, G., Lane, J., Leiser, J., Plattner, B., Song, P., Thissen, D., Liu, Y., Gross, H., & De Walt, D. (2013). Gaining the PROMIS perspective from children with nephrotic syndrome: a Midwest pediatric nephrology consortium study. BioMed Central Ltd. https://doi.org/10.17615/nmtc-tj72Chicago
Gipson, Debbie S, David T Selewski, Susan F Massengill, Larysa Wickman, Kassandra L Messer, Emily Herreshoff, Bowers Corinna et al. 2013. Gaining the Promis Perspective From Children with Nephrotic Syndrome: a Midwest Pediatric Nephrology Consortium Study. BioMed Central Ltd. https://doi.org/10.17615/nmtc-tj72- Creator
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Gipson, Debbie S
- Other Affiliation: University of Michigan
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Selewski, David T
- Other Affiliation: University of Michigan
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Massengill, Susan F
- Other Affiliation: Levine Children’s Hospital
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Wickman, Larysa
- Other Affiliation: University of Michigan
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Messer, Kassandra L
- Other Affiliation: University of Michigan
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Herreshoff, Emily
- Other Affiliation: University of Michigan
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Corinna, Bowers
- Other Affiliation: The Ohio State University
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Ferris, Maria
- Affiliation: School of Medicine, Department of Medicine
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Mahan, John D
- Other Affiliation: The Ohio State University
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Greenbaum, Larry A
- Other Affiliation: Emory University and Children’s Healthcare of Atlanta
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MacHardy, Jacqueline
- Affiliation: University of North Carolina at Chapel Hill
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Kapur, Gaurav
- Other Affiliation: Children’s Hospital of Michigan
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Chand, Deepa H
- Other Affiliation: Rush Children’s Hospital
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Goebel, Jens
- Other Affiliation: Cincinnati Children’s Hospital
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Barletta, Gina
- Other Affiliation: Phoenix Children’s Hospital
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Geary, Denis
- Other Affiliation: The Hospital for Sick Children and University of Toronto
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Kershaw, David B
- Other Affiliation: University of Michigan
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Pan, Cynthia G
- Other Affiliation: Medical College of Wisconsin
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Gbadegesin, Rasheed
- Other Affiliation: Duke University Medical Center
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Hidalgo, Guillermo
- Other Affiliation: East Carolina University
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Lane, Jerome C
- Other Affiliation: Northwestern University and Anne & Robert Lurie Children’s Hospital of Chicago
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Leiser, Jeffrey D
- Other Affiliation: Riley Hospital for Children at Indiana University Health
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Plattner, Brett W
- Other Affiliation: University of Michigan
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Song, Peter X
- Other Affiliation: University of Michigan
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Thissen, David
- Affiliation: College of Arts and Sciences, Department of Psychology and Neuroscience
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Liu, Yang
- Affiliation: College of Arts and Sciences, Department of Psychology and Neuroscience
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Gross, Heather E
- Affiliation: University of North Carolina at Chapel Hill
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DeWalt, Darren A
- Affiliation: School of Medicine
- 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
- March 4, 2013
- DOI
- Identifier
- 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
- Publisher
- BioMed Central Ltd
- Access right
- Open Access
- Date uploaded
- November 6, 2015
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