title: A longitudinal examination of health-related quality of life in children and adolescents with spina bifida.
abstract: OBJECTIVE
  The current study examined (1) spina bifida (SB) youths' health-related quality of life (HRQOL) compared with nonclinical and chronic health condition (CHC) samples, (2) parent-child agreement regarding HRQOL, and (3) prospective changes in HRQOL.
  
  
  METHODS
  Child and parent-proxy reports of Pediatric Quality of Life were collected at two time waves (Time 1: N = 134, ages 8-15 years; Time 2: N = 109, ages 10-17 years) as part of a larger longitudinal study.
  
  
  RESULTS
  SB youth had statistically and clinically reduced physical HRQOL compared with the nonclinical and CHC samples at both time points. There were significant discrepancies between youth and parent-proxy reports of HRQOL; youth reported higher levels of physical and social HRQOL than parents. The majority of parent- and child-reported HRQOL domains remained stable, yet youth-reported social HRQOL increased over time.
  
  
  CONCLUSIONS
  Youth with SB are at risk for poor HRQOL. Examining modifiable condition and social-environmental predictors of youth HRQOL will be important in informing future interventions.
authors.affiliation: Psychology Department, Loyola University Chicago, Department of Pediatrics, College of Medicine, Texas A&M University, and Department of Landscape Architecture and Urban Planning, College of Architecture, Texas A&M University cmurray3@luc.edu.
authors.forename: Caitlin B
authors.initials: CB
authors.lastname: Murray
authors.affiliation: Psychology Department, Loyola University Chicago, Department of Pediatrics, College of Medicine, Texas A&M University, and Department of Landscape Architecture and Urban Planning, College of Architecture, Texas A&M University.
authors.forename: Grayson N
authors.initials: GN
authors.lastname: Holmbeck
authors.affiliation: Psychology Department, Loyola University Chicago, Department of Pediatrics, College of Medicine, Texas A&M University, and Department of Landscape Architecture and Urban Planning, College of Architecture, Texas A&M University.
authors.forename: Anna M
authors.initials: AM
authors.lastname: Ros
authors.affiliation: Psychology Department, Loyola University Chicago, Department of Pediatrics, College of Medicine, Texas A&M University, and Department of Landscape Architecture and Urban Planning, College of Architecture, Texas A&M University.
authors.forename: Donna M
authors.initials: DM
authors.lastname: Flores
authors.affiliation: Psychology Department, Loyola University Chicago, Department of Pediatrics, College of Medicine, Texas A&M University, and Department of Landscape Architecture and Urban Planning, College of Architecture, Texas A&M University.
authors.forename: Sophie A
authors.initials: SA
authors.lastname: Mir
authors.affiliation: Psychology Department, Loyola University Chicago, Department of Pediatrics, College of Medicine, Texas A&M University, and Department of Landscape Architecture and Urban Planning, College of Architecture, Texas A&M University Psychology Department, Loyola University Chicago, Department of Pediatrics, College of Medicine, Texas A&M University, and Department of Landscape Architecture and Urban Planning, College of Architecture, Texas A&M University.
authors.forename: James W
authors.initials: JW
authors.lastname: Varni
mesh_terms: D000293:Adolescent; D016022:Case-Control Studies; D002648:Child; D002908:Chronic Disease; D005260:Female; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D010290:Parents; D011446:Prospective Studies; D011788:Quality of Life / Q000523:psychology*; D016135:Spinal Dysraphism / Q000523:psychology*
keywords: longitudinal research; quality of life; spina bifida