A longitudinal examination of health-related quality of life in children and adolescents with spina bifida. Academic Article uri icon

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.

published proceedings

  • J Pediatr Psychol

author list (cited authors)

  • Murray, C. B., Holmbeck, G. N., Ros, A. M., Flores, D. M., Mir, S. A., & Varni, J. W.

citation count

  • 37

complete list of authors

  • Murray, Caitlin B||Holmbeck, Grayson N||Ros, Anna M||Flores, Donna M||Mir, Sophie A||Varni, James W

publication date

  • May 2015