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

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Gipson, Debbie S.; Selewski, David T.; Massengill, Susan F.; Wickman, Larysa; Messer, Kassandra L.; Herreshoff, Emily; Bowers, Corinna; Ferris, Maria E.; Mahan, John D.; Greenbaum, Larry A.; MacHardy, Jackie; Kapur, Gaurav; Chand, Deepa H.; Goebel, Jens; Barletta, Gina Marie; Geary, Denis; Kershaw, David B.; Pan, Cynthia G.; Gbadegesin, Rasheed; Hidalgo, Guillermo; Lane, Jerome C.; Leiser, Jeffrey D.; Plattner, Brett W.; Song, Peter X.; Thissen, David; Liu, Yang; Gross, Heather E.; DeWalt, Darren A.
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.
URI
http://hdl.handle.net/10342/5753
Subject
 Patient reported outcomes; Quality of life; Nephrotic syndrome; Pediatrics 
Date
2013
Citation:
APA:
Gipson, Debbie S., & Selewski, David T., & Massengill, Susan F., & Wickman, Larysa, & Messer, Kassandra L., & Herreshoff, Emily, & Bowers, Corinna, & Ferris, Maria E., & Mahan, John D., & Greenbaum, Larry A., & MacHardy, Jackie, & Kapur, Gaurav, & Chand, Deepa H., & Goebel, Jens, & Barletta, Gina Marie, & Geary, Denis, & Kershaw, David B., & Pan, Cynthia G., & Gbadegesin, Rasheed, & Hidalgo, Guillermo, & Lane, Jerome C., & Leiser, Jeffrey D., & Plattner, Brett W., & Song, Peter X., & Thissen, David, & Liu, Yang, & Gross, Heather E., & DeWalt, Darren A.. (January 2013). Gaining the PROMIS perspective from children with nephrotic syndrome: a Midwest pediatric nephrology consortium study. Health and Quality of Life Outcomes, 11(), 30- 30. Retrieved from http://hdl.handle.net/10342/5753

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MLA:
Gipson, Debbie S., and Selewski, David T., and Massengill, Susan F., and Wickman, Larysa, and Messer, Kassandra L., and Herreshoff, Emily, and Bowers, Corinna, and Ferris, Maria E., and Mahan, John D., and Greenbaum, Larry A., and MacHardy, Jackie, and Kapur, Gaurav, and Chand, Deepa H., and Goebel, Jens, and Barletta, Gina Marie, and Geary, Denis, and Kershaw, David B., and Pan, Cynthia G., and Gbadegesin, Rasheed, and Hidalgo, Guillermo, and Lane, Jerome C., and Leiser, Jeffrey D., and Plattner, Brett W., and Song, Peter X., and Thissen, David, and Liu, Yang, and Gross, Heather E., and DeWalt, Darren A.. "Gaining the PROMIS perspective from children with nephrotic syndrome: a Midwest pediatric nephrology consortium study". Health and Quality of Life Outcomes. 11:. (30-30), January 2013. September 27, 2023. http://hdl.handle.net/10342/5753.
Chicago:
Gipson, Debbie S. and Selewski, David T. and Massengill, Susan F. and Wickman, Larysa and Messer, Kassandra L. and Herreshoff, Emily and Bowers, Corinna and Ferris, Maria E. and Mahan, John D. and Greenbaum, Larry A. and MacHardy, Jackie and Kapur, Gaurav and Chand, Deepa H. and Goebel, Jens and Barletta, Gina Marie and Geary, Denis and Kershaw, David B. and Pan, Cynthia G. and Gbadegesin, Rasheed and Hidalgo, Guillermo and Lane, Jerome C. and Leiser, Jeffrey D. and Plattner, Brett W. and Song, Peter X. and Thissen, David and Liu, Yang and Gross, Heather E. and DeWalt, Darren A., "Gaining the PROMIS perspective from children with nephrotic syndrome: a Midwest pediatric nephrology consortium study," Health and Quality of Life Outcomes 11, no. (January 2013), http://hdl.handle.net/10342/5753 (accessed September 27, 2023).
AMA:
Gipson, Debbie S., Selewski, David T., Massengill, Susan F., Wickman, Larysa, Messer, Kassandra L., Herreshoff, Emily, Bowers, Corinna, Ferris, Maria E., Mahan, John D., Greenbaum, Larry A., MacHardy, Jackie, Kapur, Gaurav, Chand, Deepa H., Goebel, Jens, Barletta, Gina Marie, Geary, Denis, Kershaw, David B., Pan, Cynthia G., Gbadegesin, Rasheed, Hidalgo, Guillermo, Lane, Jerome C., Leiser, Jeffrey D., Plattner, Brett W., Song, Peter X., Thissen, David, Liu, Yang, Gross, Heather E., DeWalt, Darren A.. Gaining the PROMIS perspective from children with nephrotic syndrome: a Midwest pediatric nephrology consortium study. Health and Quality of Life Outcomes. January 2013; 11(): 30-30. http://hdl.handle.net/10342/5753. Accessed September 27, 2023.
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