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. 2015 May;40(4):419-30.
doi: 10.1093/jpepsy/jsu098. Epub 2014 Nov 29.

A longitudinal examination of health-related quality of life in children and adolescents with spina bifida

Caitlin B Murray  1 , Grayson N Holmbeck  2 , Anna M Ros  2 , Donna M Flores  2 , Sophie A Mir  2 , James W Varni  3
Affiliations

A longitudinal examination of health-related quality of life in children and adolescents with spina bifida

Caitlin B Murray et al. J Pediatr Psychol. 2015 May.

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.

Keywords: longitudinal research; quality of life; spina bifida.

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