Jonathan Abel

Addendum

For my doctoral research, I investigated changes in prevalence, premature mortality and their risk factors, the overall burden in disability-adjusted life-years and healthcare for children with epilepsy and impairments in cognitive, vision, hearing and motor functioning. This was done by conducting systematic reviews and analysing epidemiological data obtained from a defined rural setting in Kenya.

In Chapter 3 (a systematic review), it was reported that mortality was higher in childhood-onset epilepsy compared to intellectual disability. More specific, in epilepsy, mortality was highest: soon after diagnosis; among younger age groups; when comorbid neurological disorders were present; among cases with structural/metabolic types, and among untreatable epilepsy, but there were no differences by sex. Most deaths were caused by non-epilepsy-related causes. For intellectual disability, mortality was reported to be highest in younger age groups; among females; in severe to profound types; among those with congenital disorders; among those with comorbid neurological disorders (including adverse pregnancy and perinatal events). Respiratory infections and comorbid neurological disorders were the leading causes of death. Most of the studies on this subject originate from high-income countries (HICs); few studies have been conducted in low- and middle-income countries (LMICs). Mortality is infrequently examined in vision, hearing, and motor impairments. It was concluded that individuals with childhood-onset NI have an increased risk for premature mortality and their survival could be improved through early interventions targeting modifiable risk factors and underlying causes.

In chapter 4, we conducted a systematic review to identify and classify barriers limiting access and utilization of preventive, curative and rehabilitative services by children with neurological impairments in LMICs. The most significant barriers described were poverty, geographical inaccessibility, inadequate healthcare resources, low health literacy and prohibitive cultures and beliefs. Other barriers described were related to the attitudes of the patients, health workers or the society, poor doctor-patient communication, physical inaccessibility, and a lack of confidentiality for personal information. It was concluded that sensitization and economic empowerment initiatives and strengthening of the healthcare system may improve utilization of biomedical care by children with NI in LMICs.

In Chapter 5, we describe geographical and temporal changes in the prevalence and risk factors for NI for children aged 6 to 9 years. While the prevalence of epilepsy, hearing and motor impairments decreased over time, that for cognitive and vision impairments remained unchanged. There was little evidence of geographical variation in the prevalence in either survey. The association between NI and some risk factors changed significantly with the year of the survey, for example, increased association of adverse perinatal events with hearing impairments. Annual admission rates with preterm births, low-birthweight and neonatal encephalopathy significantly increased between 2005 and 2015. We concluded that there was a significant decline in the prevalence of NI and differential changes in the associations of some risk factors with NI over the study period. The prevalence of NI can be reduced using similar interventions across the defined area.

In Chapter 6, we describe the results of a cohort study, which was based on a two-phase epidemiological survey to measure the magnitude of premature mortality in children aged 6 to 9 years and to identify risk factors and causes of death. It was found that children with NI had a three to four-fold increased risk of premature mortality compared to their peers without NI, over about 15 years. Our data did not identify variation in the risk of death by sex, severity, or domain of impairment. Developmental delay and severe malnutrition significantly increased the risk of mortality in children with NI. Furthermore, it was found that Infections, such as HIV, and accidents were common among all decedents.

In Chapter 7, we describe the estimation of the risk of hospitalization comparing children with and without NI, identified causes and outcomes of hospitalization. We also describe the patterns for rehabilitative care for children and adolescents in Kilifi County Hospital. The risk of hospitalization was found to be similar between the two groups. Seizures and malaria were found to be the main causes of hospitalization and the presence of electricity in the household was the only factor associated with reduced odds of hospitalization. Furthermore, we found that most of the outpatient paediatric visits for rehabilitative care were related to cerebral palsy and intellectual developmental delay; health education, rehabilitative exercises, and assistive technology were the most common interventions. We concluded that rates of hospital use were similar for children with and without NI and that evidence-based and tailored rehabilitative interventions are urgently required.

In chapter 8, empirical and literature estimates were used to model disability-adjusted life years (DALYs), years lived with disability (YLDs) and years of life lost to premature mortality (YLLs) for children aged 5 to 14 years in five domains: epilepsy (lifetime and active) and moderate-to-severe cognitive, hearing, motor, and visual impairments. NI in the five domains resulted in a significantly high burden of DALYs (53 DALYs per 1,000 children), of which the larger proportion (83%) were YLLs. Girls had significantly more YLLs and DALYs than boys. Besides being the leading cause of fatal and non-fatal outcomes, epilepsy accounted for the greatest proportion of the total burden for a single domain; visual impairment accounted for the least proportion.

I recommend future epidemiological studies in survival cohorts of children (in Kenya and similar settings) to monitor and validate empirical evidence on the trends in the incidence, prevalence, risk factors, premature mortality, and the overall burden associated with NI and disability. Evidence from such studies will inform policy and provide the framework for the design, implementation, and evaluation of appropriate and multi-level interventions. I cannot over-emphasize the importance of government in legislating and enforcing the requisite legal framework to support the healthcare and education of children with NI and disability.

In addition, assessment of child growth and development should be promoted and formalised in the community, especially in hospitals and schools, using rapid and validated screening tools for early detection and intervention for NI and disability. Early detection might increase the chances of uptake of effective interventions to improve the quality of life among affected children and their caregivers, prevent premature mortality, improve participation in society, and ultimately improve health and non-health outcomes.

It is imperative to continue promoting maternal and childcare to address adverse prenatal, perinatal/neonatal, and postnatal risk factors for NI and disability and the utilization of biomedical healthcare by all mothers (and caregivers) and their children from the antenatal stage, during delivery and after delivery. Besides, it is important to sustain/increase childhood vaccination coverage, further control infections such as malaria and meningitis, and address the problem of undernutrition/household food security, and related determinants of NI and disability such as poverty and health literacy.

It is important to emphasise that the similarity of risk factors and causes of death across the five domains of NI provides an opportunity for integration of preventive, curative and rehabilitative services. Integrated interventions targeting modifiable risk factors, for instance, improving access to anti-seizure medications, assistive devices and technology, as well as caregiver/parental training, child supervision, and prevention of opportunistic infections, immunization, and improved nutrition, are required to improve survival and quality of life among the affected children and their families.

Comprehensive/tailored and evidence-based patient-level rehabilitative interventions for children with NI and disability, such as the provision of assistive devices and technology, are urgently required both in formal healthcare and community-based systems. Known barriers limiting access and utilization of existing healthcare by children with NI and disability should be addressed by: (i) expanding health insurance coverage; (ii) improving healthcare infrastructure; (iii) further decentralization of healthcare services; (iv) adequate training and staffing of public healthcare facilities, and; (v) investment in structured health education and promotion.