Assessing neurodevelopmental outcome in children with hydrocephalus in Malawi. A pilot study.

Introduction: Congenital and infantile hydrocephalus are assumed to be major contributors to pediatric morbidity, mortality and functional disability in low-income countries. Despite this, epidemiologic data and the overview of neurodevelopmental outcomes in these regions is very limited. We aimed to pilot the use of a wide range of more locally suitable tools to assess neurodevelopment to understand whether they were feasible for use and could provide estimates of developmental delay and poor functioning in a population of children with hydrocephalus in Malawi.

Methods: We conducted a prospective observational cohort study, at the tertiary neurosurgery clinic in Blantyre, Malawi in 2018, recruiting consecutive children with congenital and infantile hydrocephalus who were previously treated with ventriculoperitoneal shunts and endoscopic third ventriculostomy (ETV) in the neurosurgery unit of the hospital. We assessed demographic details, and gained information on children's functioning using the Liverpool Outcome Score (LOS), and the Eating and Drinking Ability Classification System as well as full anthropometric assessment and child development with the Malawi Developmental Assessment Tool (MDAT).

Results: All tools were feasible for use, easy to train on, could be used for assessing children with hydrocephalus and were suitable to adapt for our environment. We evaluated 41 children, aged 2-60 months with a mean age of 22.6 months (interquartile range [IQR] = 8.3 months -36.5 months). Functional assessment using the Liverpool Outcome Score showed the majority of children 92.7% (CI 80.1-98.5, n = 38) had severe sequelae from the hydrocephalus and were dependent on their parents or caregivers. Only 27 children (65.9%, CI 49.4, 80.0) had full or expected control of their bowel and bladder and 6 children (14.6%, CI 5.6, 29.2), had a recent history of seizures. About two thirds (63.4% CI 45.0-77.9, n = 26/41) of children were able to eat and to drink safely and efficiently. Over two thirds of the children (70.7%, CI 56.8, 84.6, n = 29) were stunted and almost half of the cohort underweight (43.9%,(CI 28.5, 60.3, n = 18). Almost half 48.8% (CI 32.9, 64.9, n = 20/41) had developmental delay on MDAT with 41.5% (CI 26.4, 56.6, n = 17/41) graded as severely delayed (-<2sd on developmental age z score). We found significant associations between dependence identified by the LOS and developmental delay according to the MDAT (p = 0.014, Pearson's chi-squared test).

Conclusion: This pilot study demonstrates that the assessment tools we used identified a high proportion of children with hydrocephalus as having functional difficulties, stunted growth and developmental delay, in Malawi. Use of these tools can now be scaled up and will be helpful to support research in understanding what factors contribute to poor functioning, growth and development in these cohorts and help us to investigate what strategies may prevent and support children with hydrocephalus in African settings.