Quality of life in children with hydrocephalus: results from the Hospital for Sick Children, Toronto

Object Children with hydrocephalus face several quality of life (QOL) issues that have been poorly studied. The authors' aim was to quantify the QOL for children with hydrocephalus and identify predictors of long-term outcome, using a reliable and validated outcome measure: the Hydrocephalus Outcome Questionnaire (HOQ). Methods All children (5–18 years old) with treated hydrocephalus attending the neurosurgery outpatient clinic at the Hospital for Sick Children were asked to participate. The patient's QOL was measured by the parent-completed HOQ. Predictor variables were extracted from the medical records. Multivariable linear regression was used to identify those predictor variables that were significantly associated with outcome. Results There was an 89% participation rate, with a total of 346 children participating (mean age 11.7 years, mean duration since diagnosis 9.9 years). Their mean HOQ Overall Health score was 0.68 (on a scale of 0 [worst QOL] to 1.0 [best QOL]). On multivariable analysis, the following predictors were associated with a worse overall QOL: increased seizure frequency, increased length of stay (LOS) in the hospital for the initial treatment of hydrocephalus, increased LOS for treatment of shunt infection and shunt overdrainage, increased number of proximal shunt catheters in situ, and increased distance of the family residence from the pediatric neurosurgical center. Conclusions For the first time, these results establish baseline QOL values for a typical large group of children many years after their diagnosis of hydrocephalus, by using a validated and reproducible outcome measure. Many of the factors that adversely impact QOL appear to be related to shunt complications and might, therefore, be modifiable.