title: The impact of disease duration on quality of life in children with nephrotic syndrome: a Midwest Pediatric Nephrology Consortium study.
abstract: BACKGROUND
  The Patient Reported Outcomes Measurement Information System (PROMIS) II is a prospective study that evaluates patient reported outcomes in pediatric chronic diseases as a measure of health-related quality of life (HRQOL). We have evaluated the influence of disease duration on HRQOL and, for the first time, compared the findings of the PROMIS measures to those of the PedsQL™ 4.0 Generic Scales (PedsQL) from the PROMIS II nephrotic syndrome (NS) longitudinal cohort.
  
  
  METHODS
  This was a prospective study in which 127 children (age range 8-17 years) with active NS from 14 centers were enrolled. Children with active NS defined as the presence of nephrotic range proteinuria (>2+ urinalysis and edema or urine protein/creatinine ratio >2 g/g) were eligible. Comparisons were made between children with prevalent (N = 67) and incident (N = 60) disease at the study enrollment visit.
  
  
  RESULTS
  The PROMIS scores were worse in prevalent patients in the domains of peer relationship (p = 0.01) and pain interference (p < 0.01). The PedsQL showed worse scores in prevalent patients for social functioning (p < 0.01) and school functioning (p = 0.03). Multivariable analyses showed that prevalent patients had worse scores in PROMIS pain interference (p = 0.02) and PedsQL social functioning (p < 0.01).
  
  
  CONCLUSIONS
  The PROMIS measures detected a significant impact of disease duration on HRQOL in children, such that peer relationships were worse and pain interfered with daily life to a greater degree among those with longer disease duration. These findings were in agreement with those for similar domains in the PedsQL legacy instrument.
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, dselewsk@med.umich.edu.
authors.forename: David T
authors.initials: DT
authors.lastname: Selewski
authors.forename: Jonathan P
authors.initials: JP
authors.lastname: Troost
authors.forename: Susan F
authors.initials: SF
authors.lastname: Massengill
authors.forename: Rasheed A
authors.initials: RA
authors.lastname: Gbadegesin
authors.forename: Larry A
authors.initials: LA
authors.lastname: Greenbaum
authors.forename: Ibrahim F
authors.initials: IF
authors.lastname: Shatat
authors.forename: Yi
authors.initials: Y
authors.lastname: Cai
authors.forename: Gaurav
authors.initials: G
authors.lastname: Kapur
authors.forename: Diane
authors.initials: D
authors.lastname: Hebert
authors.forename: Michael J
authors.initials: MJ
authors.lastname: Somers
authors.forename: Howard
authors.initials: H
authors.lastname: Trachtman
authors.forename: Priya
authors.initials: P
authors.lastname: Pais
authors.forename: Michael E
authors.initials: ME
authors.lastname: Seifert
authors.forename: Jens
authors.initials: J
authors.lastname: Goebel
authors.forename: Christine B
authors.initials: CB
authors.lastname: Sethna
authors.forename: John D
authors.initials: JD
authors.lastname: Mahan
authors.forename: Heather E
authors.initials: HE
authors.lastname: Gross
authors.forename: Emily
authors.initials: E
authors.lastname: Herreshoff
authors.forename: Yang
authors.initials: Y
authors.lastname: Liu
authors.forename: Peter X
authors.initials: PX
authors.lastname: Song
authors.forename: Bryce B
authors.initials: BB
authors.lastname: Reeve
authors.forename: Darren A
authors.initials: DA
authors.lastname: DeWalt
authors.forename: Debbie S
authors.initials: DS
authors.lastname: Gipson
mesh_terms: D000293:Adolescent; D002648:Child; D015331:Cohort Studies; D004521:Educational Measurement / Q000706:statistics & numerical data; D005260:Female; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D009404:Nephrotic Syndrome / Q000150:complications / Q000453:epidemiology / Q000523:psychology; D010146:Pain / Q000209:etiology; D010372:Pediatrics / Q000379:methods / Q000706:statistics & numerical data; D011507:Proteinuria / Q000209:etiology; D011788:Quality of Life; D066107:Social Skills; D013995:Time; D014481:United States / Q000453:epidemiology