Caitlin B Murray1, Grayson N Holmbeck2, Anna M Ros2, Donna M Flores2, Sophie A Mir2, James W Varni3. 1. 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. 2. 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. 3. 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.
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.
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.
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