Introduction: Children with myelomeningocele (MMC) often develop hydrocephalus, and the combination of these conditions can lead to psychosocial, cognitive, and physical health issues that decrease their health-related quality of life (HRQOL). The goal of the present study was to understand the QOL in patients with MMC and shunted hydrocephalus.
Methods: Data from the Toronto Hydrocephalus QOL Database was acquired between 2004 and 2009 using parent-completed questionnaires and, when appropriate, child-completed questionnaires: Hydrocephalus Outcome Questionnaire (HOQ) and the Health Utilities Index. We identified several medical and socioeconomic factors potentially relevant to the outcome measure (e.g., level of myelomeningocele, length of stay in hospital, and shunt-related hospital admissions; family functioning, income, parental education, employment status, etc.). Linear regression models were used to examine associations between potential predictor variables and HRQOL, with P < 0.05 in the multivariate model suggesting significance.
Results: The analysis consisted of 131 patients (mean age = 12.6, SD = 3.7). The mean HUI score was 0.51, and the mean HOQ overall health score was 0.67. There was a significant association between lower age and higher HOQ social-emotional health (P = 0.03) and HUI scores (P = 0.03), lower anatomical level of myelomeningocele and higher HUI scores (P = 0.01), better family functioning and higher HOQ overall health scores (P = 0.004), and higher family income and higher HOQ overall health, physical health, and HUI scores (P = 0.001, P = 0.003, and P = 0.02, respectively).
Conclusion: Myelomeningocele patients with shunted hydrocephalus can have a poor health-related quality of life. Our results indicate a strong association of income and family functioning on quality of life, along with younger age and lower level of myelomeningocele.
Keywords: Hydrocephalus; Hydrocephalus Outcome Questionnaire; Myelomeningocele; Quality of life; Shunt.