Shunted hydrocephalus has a significant impact on quality of life in children with spina bifida

Objective: To determine which clinical (health status) and nonclinical (demographic) factors may affect perceptions of quality of life in children with spina bifida and their parents. Design: A prospective study by using a validated questionnaire. Setting: A multidisciplinary spina bifida clinic at a pediatric tertiary referral center. Patients: Thirty-three children with spina bifida aged 5-18 years and 41 parents of children with spina bifida aged 2-18 years completed questionnaires after informed consent was obtained. Methods: The Peds QL 4.0 Short Form 15 questionnaire was administered to children with spina bifida and their parents. Additional data were collected, including socioeconomic status, self-reported ethnicity, insurance status, ambulatory status, presence of shunted hydrocephalus, and continence. All completed questionnaires were included in the final analysis. Results: Self-reported physical and psychosocial health scores for patients in our study were lower than previously published scores from healthy children. Patients with a shunted hydrocephalus had significantly lower self-reported physical health scores compared with those without shunted hydrocephalus (61.4 versus 39.3; P= .015). Self-reported physical health score in those with shunted hydrocephalus improved with age (Spearman ρ= 0.42; P= .017). Shunted hydrocephalus remained significant on multivariate analysis. Ethnicity, insurance, socioeconomic status, ambulatory status, and urinary and fecal continence were not associated with self-reported physical or psychosocial scores. Parent-reported scores were not associated with any of the variables of interest. There was excellent correlation between parent-reported and self-reported psychosocial health scores (Spearman ρ= 0.636; P< .001) but not physical health scores (Spearman ρ= 0.023; P= .905). Conclusions: Shunted hydrocephalus has a negative impact on the perception of quality of life, an effect that may be attenuated by age. Further study and more-specific measurement tools are needed to better understand health-related quality of life in children with spina bifida.