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

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
Health and quality of life outcomes | 2013

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.

Pubmed ID: 23510630

Research resources used in this publication

None found

Additional research tools detected in this publication

Antibodies used in this publication

None found

Associated grants

  • Agency: NIAMS NIH HHS, United States
    Id: 1U01AR057948
  • Agency: NIAMS NIH HHS, United States
    Id: 1U01AR057967
  • Agency: NIAMS NIH HHS, United States
    Id: 1U01AR052171
  • Agency: NIAMS NIH HHS, United States
    Id: 2U01AR052186
  • Agency: NIAMS NIH HHS, United States
    Id: 1U01AR057940
  • Agency: NIAMS NIH HHS, United States
    Id: 2U01AR052181
  • Agency: NIAMS NIH HHS, United States
    Id: 1U01AR057956
  • Agency: NIAMS NIH HHS, United States
    Id: 1U54AR057951
  • Agency: NIAMS NIH HHS, United States
    Id: 1U01AR057954
  • Agency: NCRR NIH HHS, United States
    Id: UL1 RR025755
  • Agency: NIAMS NIH HHS, United States
    Id: 1U01AR057929
  • Agency: NCRR NIH HHS, United States
    Id: UL1RR025747
  • Agency: NIAMS NIH HHS, United States
    Id: 1U01AR052181
  • Agency: NIAMS NIH HHS, United States
    Id: U01AR057971
  • Agency: NIAMS NIH HHS, United States
    Id: 1U54AR057926
  • Agency: NIAMS NIH HHS, United States
    Id: 2U01AR052158
  • Agency: NIAMS NIH HHS, United States
    Id: 1U01AR057936
  • Agency: NIDDK NIH HHS, United States
    Id: K08 DK082495
  • Agency: NIAMS NIH HHS, United States
    Id: 2U01AR052155
  • Agency: NIAMS NIH HHS, United States
    Id: 1U54AR057943

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Patient-Reported Outcomes Measurement Information System (tool)

RRID:SCR_004718

Repository of person centered measures that evaluates and monitors physical, mental, and social health in adults and children.

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