Global Burden of Childhood Epilepsy, Intellectual Disability, and Sensory Impairments

Abstract

BACKGROUND: Estimates of children and adolescents with disabilities worldwide are needed to inform global intervention under the disability-inclusive provisions of the Sustainable Development Goals. We sought to update the most widely reported estimate of 93 million children ,15 years with disabilities from the Global Burden of Disease Study 2004. METHODS: We analyzed Global Burden of Disease Study 2017 data on the prevalence of childhood epilepsy, intellectual disability, and vision or hearing loss and on years lived with disability (YLD) derived from systematic reviews, health surveys, hospital and claims databases, cohort studies, and disease-specific registries. Point estimates of the prevalence and YLD and the 95% uncertainty intervals (UIs) around the estimates were assessed. RESULTS: Globally, 291.2 million (11.2%) of the 2.6 billion children and adolescents (95% UI: 249.9-335.4 million) were estimated to have 1 of the 4 specified disabilities in 2017. The prevalence of these disabilities increased with age from 6.1% among children aged ,1 year to 13.9% among adolescents aged 15 to 19 years. A total of 275.2 million (94.5%) lived in lowand middle-income countries, predominantly in South Asia and sub-Saharan Africa. The top 10 countries accounted for 62.3% of all children and adolescents with disabilities. These disabilities accounted for 28.9 million YLD or 19.9% of the overall 145.3 million (95% UI: 106.9-189.7) YLD from all causes among children and adolescents. CONCLUSIONS: The number of children and adolescents with these 4 disabilities is far higher than the 2004 estimate, increases from infancy to adolescence, and accounts for a substantial proportion of all-cause YLD. WHAT'S KNOWN ON THIS SUBJECT: The World Disability Report 2011 indicated that at least 93 million (∼5.1%) children ,15 years old had a moderate-to-severe disability and 13 million (0.7%) had a severe disability on the basis of the Global Burden of Disease Study 2004. WHAT THIS STUDY ADDS: More than 291 million children aged ,20 years had epilepsy and intellectual and sensory disabilities in 2017. The top 10 countries accounted for 62% of the children with these disabilities, and 95% lived in low and middle income countries.

The Participation of Children with Intellectual Disabilities: Including the Voices of Children and Their Caregivers in India and South Africa

“…First, the majority of research has been conducted among children with cerebral palsy, while research on other disabilities has been limited [ 7 , 8 , 9 , 10 , 11 , 12 , 13 ]. This is despite evidence that intellectual disability has been ranked as one of the most severe and commonly occurring disabilities in children worldwide [ 14 ]. Intellectual disability is a pervasive and lifelong condition characterised by significant limitations in both intellectual functioning and adaptive behaviour originating before the age of 18 years [ 15 ].…”

“…A fourth concern relating to the dearth of participation research in low- and middle-income countries is evidence that worldwide up to 94.5% of children with epilepsy, intellectual disabilities, vision, or hearing loss live in low and middle-income countries [ 14 , 30 ]. Hence, the data on the participation of children with intellectual disabilities is limited both in extent (research among children with intellectual disabilities) and context (research in low- and middle-income countries).…”

“…The countries for the study were selected because India has one of the highest (≈6%), and South Africa has one of the lowest (≈2.25%) reported prevalence of intellectual disability among middle-income countries [ 14 ]. In addition, India and South Africa both have cultures that differ from those of high-income countries.…”

The Role of Social Support in Participation Perspectives of Caregivers of Children with Intellectual Disabilities in India and South Africa

“…Intellectual disability is one of the leading developmental disabilities in low- and middle-income countries [ 69 , 70 ]. For caregivers, a child with an intellectual disability can increase the stress and demands of parenting.…”

“…India and South Africa were selected since both countries have been identified as having cultures in which households are more commonly multigenerational. However, India is a lower-middle-income country and has a very high reported prevalence of intellectual disability (≈6%), while South Africa is an upper-middle-income country and has a lower reported prevalence (≈2.25%) of intellectual disability [ 69 , 70 ].…”