A Longitudinal Examination of Health-Related Quality of Life in Children and Adolescents With Spina Bifida

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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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