title: Gaining the PROMIS perspective from children with nephrotic syndrome: a Midwest pediatric nephrology consortium study.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  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.
authors.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.
authors.forename: Debbie S
authors.initials: DS
authors.lastname: Gipson
authors.forename: David T
authors.initials: DT
authors.lastname: Selewski
authors.forename: Susan F
authors.initials: SF
authors.lastname: Massengill
authors.forename: Larysa
authors.initials: L
authors.lastname: Wickman
authors.forename: Kassandra L
authors.initials: KL
authors.lastname: Messer
authors.forename: Emily
authors.initials: E
authors.lastname: Herreshoff
authors.forename: Corinna
authors.initials: C
authors.lastname: Bowers
authors.forename: Maria E
authors.initials: ME
authors.lastname: Ferris
authors.forename: John D
authors.initials: JD
authors.lastname: Mahan
authors.forename: Larry A
authors.initials: LA
authors.lastname: Greenbaum
authors.forename: Jackie
authors.initials: J
authors.lastname: MacHardy
authors.forename: Gaurav
authors.initials: G
authors.lastname: Kapur
authors.forename: Deepa H
authors.initials: DH
authors.lastname: Chand
authors.forename: Jens
authors.initials: J
authors.lastname: Goebel
authors.forename: Gina Marie
authors.initials: GM
authors.lastname: Barletta
authors.forename: Denis
authors.initials: D
authors.lastname: Geary
authors.forename: David B
authors.initials: DB
authors.lastname: Kershaw
authors.forename: Cynthia G
authors.initials: CG
authors.lastname: Pan
authors.forename: Rasheed
authors.initials: R
authors.lastname: Gbadegesin
authors.forename: Guillermo
authors.initials: G
authors.lastname: Hidalgo
authors.forename: Jerome C
authors.initials: JC
authors.lastname: Lane
authors.forename: Jeffrey D
authors.initials: JD
authors.lastname: Leiser
authors.forename: Brett W
authors.initials: BW
authors.lastname: Plattner
authors.forename: Peter X
authors.initials: PX
authors.lastname: Song
authors.forename: David
authors.initials: D
authors.lastname: Thissen
authors.forename: Yang
authors.initials: Y
authors.lastname: Liu
authors.forename: Heather E
authors.initials: HE
authors.lastname: Gross
authors.forename: Darren A
authors.initials: DA
authors.lastname: DeWalt
mesh_terms: D000293:Adolescent; D002648:Child; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D008297:Male; D015146:Midwestern United States; D009404:Nephrotic Syndrome / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D015203:Reproducibility of Results; D057566:Self Report; D011795:Surveys and Questionnaires