Quality of life in children operated for spina bifida; low- and middle-income country perspective.

INTRODUCTION: Spina bifida is a potentially disabling congenital condition and affects the quality of life (QOL). We aimed to assess clinical outcomes and QOL in children who underwent spina bifida repair at our hospital. METHODS: This was a retrospective cohort study on children who underwent spina bifida repair at our hospital over 10 years. Phone calls were made to parents of the children, and the Health Utility Index Mark 3 (HUI 3) score was used to assess QoL, and degree of disability. Demographics and clinical data were obtained from the medical chart review. Statistical analysis was done using SPSS (version 21). RESULTS: Eighty children with a median age of 1.1 months (IQR 0.03-2.0) at the time of presentation, were included in this study. The mean follow-up period was 6.04 ± 2.54 years and the median HUI-3 score was 0.64 (IQR: 0.40 - 0.96) on a scale of 0 (dead) to 1 (perfectly healthy). Based on the severity of disability, 12 (23.1%) children had mild disability, 4 (7.7%) had moderate disability, and 23 (44.2%) had severe disability. Factors including a leaking spina bifida and paraplegia at presentation; radiological findings of hydrocephalus and Chiari malformation, were associated with a significantly low QOL. Children who required CSF diversion (EVD/ VP shunt) during the repair or at a later stage also had significantly low QOL. CONCLUSION: In LMIC, children with myelomeningocele (MMC) born with lower limb weakness, hydrocephalus, Chiari malformation, and those presenting with leaking MMC, have a significantly low QoL at a mean follow-up of 6 years.