The burden of neurological impairments and disability in older children measured in disability-adjusted life-years in rural Kenya.

Neurological impairment (NI) and disability are common in sub-Saharan Africa (SSA), but the overall burden in terms of morbidity and mortality in older children remains unknown. We estimated the burden of NI in disability-adjusted life years (DALYs), years of life lost to premature mortality (YLLs), and years lived with disability (YLDs) for older children in a defined rural setting in Kenya. We used empirical and literature estimates to model the overall burden for children aged 5-14 years in five domains: epilepsy (lifetime and active) and moderate/severe cognitive, hearing, motor, and visual impairments. We obtained internally consistent estimates of prevalence, mortality, and transitional hazards using DisMod II software. Disability weights and life expectancy estimates were based on the global burden of disease (GBD) studies. We used the most plausible parameters to calculate YLLs, YLDs, and DALYs and their bootstrapped 95% uncertainty intervals (95%UI) for the defined area. NI in the five domains resulted in a total of 4587 (95%UI 4459-4715) absolute DALYs or 53 (95%UI 39-67) DALYs per 1000 children aged 5-14 years, of which 83% were YLLs and 17% YLDs. Girls had significantly more YLLs and DALYs than boys (p-values <0.001, respectively). 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 (20 DALYs per 1000, 95%UI 11-26, or 38.5% of the total DALYs). Visual impairment accounted for the least proportion of the total burden (6 per 1000, 95%UI 1-17, or 12.1%). Children with NI and disability bear a significantly high burden of fatal and non-fatal outcomes. The burden is highest among girls and those with childhood-onset epilepsy. We recommend active identification, treatment, and rehabilitative support for the affected children to prevent premature mortality and improve their quality of life.

Neurological impairment and disability in children in rural Kenya.

AIM: To investigate geographical change over time in the burden of neurological impairments in school-aged children in a demographic surveillance area. METHOD: We investigated changes in neurological impairment prevalence in five domains (epilepsy and cognitive, hearing, vision, and motor impairments) using similar two-phase surveys conducted in 2001 (n=10 218) and 2015 (n=11 223) and determined changes in location-level prevalence, geographical clustering, and significant risk factors for children aged 6 to 9 years (mean 7y 6mo, SD 1y) of whom 50.4% were males. Admission trends for preterm birth, low birthweight (LBW), and encephalopathy were determined using admission data to a local hospital. RESULTS: Overall prevalence for any neurological impairment decreased from 61 per 1000 (95% confidence interval [CI] 48.0-74.0) in 2001 to 44.7 per 1000 (95% CI 40.9-48.6) in 2015 (p<0.001). There was little evidence of geographical variation in the prevalence of neurological impairments in either survey. The association between neurological impairments and some risk factors changed significantly with year of survey; for example, the increased association of adverse perinatal events with hearing impairments (exponentiated coefficient for the interaction=5.94, p=0.03). Annual admission rates with preterm birth (rate ratio 1.08, range 1.07-1.09), LBW (rate ratio 1.08, range 1.06-1.10), and encephalopathy (rate ratio 1.08, range 1.06-1.09) significantly increased between 2005 and 2016 (p<0.001). INTERPRETATION: There was a significant decline in the prevalence of neurological impairments and differential changes in the associations of some risk factors with neurological impairments over the study period. Limited geographical variation suggests that similar interventions are appropriate across the defined area.

Premature Mortality, Risk Factors, and Causes of Death Following Childhood-Onset Neurological Impairments: A Systematic Review.

Background: Neurological impairment (NI) and disability are associated with reduced life expectancy, but the risk and magnitude of premature mortality in children vary considerably across study settings. We conducted a systematic review to estimate the magnitude of premature mortality following childhood-onset NI worldwide and to summarize known risk factors and causes of death. Methods: We searched various databases for published studies from their inception up to 31st October 2020. We included all cohort studies that assessed the overall risk of mortality in individuals with childhood-onset epilepsy, intellectual disability (ID), and deficits in hearing, vision and motor functions. Comparative measures of mortality such as the standardized mortality ratio (SMR), risk factors and causes were synthesized quantitatively under each domain of impairment. This review is registered on the PROSPERO database (registration number CRD42019119239). Results: The search identified 2,159 studies, of which 24 studies were included in the final synthesis. Twenty-two (91.7%) studies originated from high-income countries (HICs). The median SMR was higher for epilepsy compared with ID (7.1 [range 3.1-22.4] vs. 2.9 [range 2.0-11.6]). In epilepsy, mortality was highest among younger age groups, comorbid neurological disorders, generalized seizures (at univariable levels), untreatable epilepsy, soon after diagnosis and among cases with structural/metabolic types, but there were no differences by sex. Most deaths (87.5%) were caused by non-epilepsy-related causes. For ID, mortality was highest in younger age groups and girls had a higher risk compared to the general population. Important risk factors for premature mortality were severe-to-profound severity, congenital disorders e.g., Down Syndrome, comorbid neurological disorders and adverse pregnancy and perinatal events. Respiratory infections and comorbid neurological disorders were the leading causes of death in ID. Mortality is infrequently examined in impairments of vision, hearing and motor functions. Summary: The risk of premature mortality is elevated in individuals with childhood-onset NI, particularly in epilepsy and lower in ID, with a need for more studies for vision, hearing, and motor impairments. Survival in NI could be improved through interventions targeting modifiable risk factors and underlying causes.

Barriers to access and utilization of healthcare by children with neurological impairments and disability in low-and middle-income countries: a systematic review.

Background: Neurological impairments (NI) and disability are common among older children in low-and middle-income countries (LMICs). We conducted a systematic review to examine the barriers limiting access and utilization of biomedical and rehabilitative care by children and adolescents with NI in LMICs. Methods: We searched PubMed, Latin America and Caribbean Health Sciences Literature, Global Index Medicus, and Google Scholar for studies published between 01/01/1990 and 14/11/2019 to identify relevant studies. We included all studies reporting on barriers limiting access and utilization of preventive, curative, and rehabilitative care for children aged 0-19 years with NI in five domains: epilepsy, and cognitive, auditory, visual, and motor function impairment. Data from primary studies were synthesized using both qualitative and quantitative approaches. Results: Our literature searches identified 3,258 reports of which 20 were included in the final analysis. Fifteen studies (75.0%) originated from diverse settings in sub-Saharan Africa (SSA). Factors limiting access and utilization of healthcare services in >50% of the studies were: financial constraints (N=17, 85.0%), geographical and physical inaccessibility (N=14, 70.0%), inadequate healthcare resources (N=14, 70.0%), prohibitive culture and beliefs (N=12, 60.0%), and inadequate education/awareness (N=11, 55.0%). Factors reported in <50% of the studies included competing domestic roles (N=4, 20%) and a lack of confidentiality for personal information (N=2, 10.0%). Very few reports were identified from outside Africa preventing a statistical analysis by continent and economic level. Conclusions: Financial constraints, geographic and physical inaccessibility, and inadequate healthcare resources were the most common barriers limiting access and utilization of healthcare services by children with NI in LMICs. PROSPERO registration: CRD42020165296 (28/04/2020).

Premature mortality in children aged 6-9 years with neurological impairments in rural Kenya: a cohort study.

BACKGROUND: Neurological impairments might significantly contribute to reduced life expectancy in low-income and middle-income countries (LMICs). There are no empirical studies of premature mortality in children with neurological impairments in Africa. This study estimated the risk of premature mortality in children with neurological impairments and identified risk factors and causes of death. METHODS: We did a cohort study based on a two-stage epidemiological survey in the Kilifi Health and Demographic Surveillance System (Kilifi, Kenya). Study participants were children aged 6-9 years. In the first stage, five trained field workers administered a low-cost screening tool to a random sample of households. In the second stage, we assessed for neurological impairments in five domains (epilepsy, cognitive impairments, vision impairments, hearing impairments, and motor impairments) using comprehensive clinical evaluation and extensive neuropsychological assessments. From the two-stage survey we identified a cohort of children with neurological impairment and a cohort of matched controls. We also enrolled an age-matched sample from the general population. The primary outcome was all-cause mortality. Mortality rates, standardised mortality ratio (SMR), and hazard ratios (HR) for risk factors were estimated and causes of death identified. FINDINGS: We enrolled 306 children with neurological impairment, 9912 survey controls, and 22 873 age-matched participants from the general population, and followed up the cohorts between June 1, 2001, and Aug 31, 2018. Median follow-up was 14·5 years (IQR 8·6-17·2). 11 (3·9%) of 284 children with neurological impairment, 92 (1·0%) of 9009 controls, and 272 (1·2%) of 22 873 participants in the general population sample died during the follow-up. Overall mortality rates were 309·8 per 100 000 person-years of observation (95% CI 126·7-492·9) in children with neurological impairment, 80·8 per 100 000 person-years of observation (64·3-97·3) in controls, and 98·8 per 100 000 person-years of observation (87·1-110·6) in the general population sample (mortality rate ratio 3·83, 95% CI 2·05-7·16, p<0·001, compared with controls; 3·13, 1·71-5·72, p<0·001, compared with the general population). Mortality risk in children with neurological impairment was not dependent on the severity of impairment (p=0·291) nor on a specific neurological impairment domain (p=0·205). The overall risk of death adjusted for age and sex was higher in children with neurological impairment compared with controls (HR 4·24, 95% CI 2·26-7·94, p=0·002). An SMR of 3·15 (95% CI 1·66-5·49) was obtained after using the general population sample as the reference for indirect standardisation. In multivariable risk factor analysis, developmental delay (adjusted HR 18·92, 95% CI 2·23-160·44, p=0·007) and severe malnutrition (20·92, 3·14-139·11, p=0·002) increased the risk of mortality in children with neurological impairment. Infections such as HIV/AIDS and accidents were common among all decedents. INTERPRETATION: The risk of premature mortality was higher in children diagnosed with neurological impairments compared with the general population and was increased by developmental delay and severe malnutrition. Child development and nutritional status should be assessed in all children in LMICs and tailored interventions started to improve outcomes. FUNDING: Wellcome Trust, DELTAS Africa Initiative.