Premature mortality in children with developmental disabilities
Authors: Bolajoko O Olusanya, M K C Nair
Journal: The Lancet Global Health (2019)

Global efforts towards a targeted reduction in mortality in children younger than 5 years have yielded remarkable gains since 1990. Approximately 5·4 million children in this age range died in 2017 and 9·8 million in 2000, compared with 12·6 million in 1990.1UN Interagency Group on Mortality EstimationLevels and trends in child mortality report.https://www.unicef.org/publications/index_103264.htmlDate: 2018Date accessed: September 19, 2019Google Scholar The increase in child survival was most likely accelerated by the fourth Millennium Development Goal (MDG) aimed at reducing under-5 mortality by two-thirds between 1990 and 2015.2Masquelier B Hug L Sharrow D et al.Global, regional, and national mortality trends in older children and young adolescents (5–14 years) from 1990 to 2016: an analysis of empirical data.Lancet Glob Health. 2018; 6: e1087-e1199Summary Full Text Full Text PDF PubMed Scopus (39) Google Scholar Yet, despite the sharp decline in global under-5 deaths, uneven progress has been achieved across and within countries, especially in south Asia and sub-Saharan Africa, which account for about 80% of under-5 deaths globally.1UN Interagency Group on Mortality EstimationLevels and trends in child mortality report.https://www.unicef.org/publications/index_103264.htmlDate: 2018Date accessed: September 19, 2019Google Scholar, 2Masquelier B Hug L Sharrow D et al.Global, regional, and national mortality trends in older children and young adolescents (5–14 years) from 1990 to 2016: an analysis of empirical data.Lancet Glob Health. 2018; 6: e1087-e1199Summary Full Text Full Text PDF PubMed Scopus (39) Google Scholar However, the reductions in under-5 mortality have presented new challenges for the global health community. First, there has been no corresponding reduction in the subpopulation of children under 5 years with lifelong neurological impairments or developmental disabilities. For example, although child mortality in sub-Saharan Africa decreased by 20·8% from 3·4 million in 1990 to 2·7 million in 2016, the number of children under-5 years with epilepsy, intellectual disability, sensory impairments, autism spectrum disorder, and attention-deficit hyperactivity disorder rose by 71·3% from 8·6 million in 1990 to 14·7 million in 2016.3Olusanya BO de Vries PJ African Consortium of The Global Research on Developmental Disabilities CollaboratorsNurturing care for children with developmental disabilities: a moral imperative for sub-Saharan Africa.Lancet Child Adolesc Health. 2018; 2: 772-774Summary Full Text Full Text PDF PubMed Scopus (15) Google Scholar These children have a higher risk of abuse and premature death, including infanticide, compared with children without disabilities.4Bayat M The stories of ‘snake children’: killing and abuse of children with developmental disabilities in West Africa.J Intellect Disabil Res. 2015; 59: 1-10Crossref PubMed Scopus (23) Google Scholar Second, there is global consensus that current child health policy must include considerations for all survivors to thrive and achieve their full developmental potential;5WHOUNICEFThe World Bank GroupOperationalizing nurturing care for early childhood development: the role of the health sector alongside other sectors and actors.https://nurturing-care.org/wp-content/uploads/2019/07/Operationalizing-NC.pdfDate accessed: September 19, 2019Google Scholar children with disabilities have a greater risk of not realising their developmental potential than children without disabilities. Third, more children are living beyond their 5th birthday when mortality risks tend to be lowest, yet sizeable.2Masquelier B Hug L Sharrow D et al.Global, regional, and national mortality trends in older children and young adolescents (5–14 years) from 1990 to 2016: an analysis of empirical data.Lancet Glob Health. 2018; 6: e1087-e1199Summary Full Text Full Text PDF PubMed Scopus (39) Google Scholar But little attention was given to older children and younger adolescents under the MDG era,1UN Interagency Group on Mortality EstimationLevels and trends in child mortality report.https://www.unicef.org/publications/index_103264.htmlDate: 2018Date accessed: September 19, 2019Google Scholar and the mortality risks associated with disabilities in older children, particularly those from low-income and middle-income countries (LMICs), have not been duly recognised, mainly because of the dearth of population-based data. The study by Jonathan Abuga and colleagues in The Lancet Global Health6Abuga JA Kariuki SM Kinyanjui SM Van Hensbroek MB Newton CRJC Premature mortality in children aged 6–9 years with neurological impairments in rural Kenya: a cohort study.Lancet Glob Health. 2019; (published online Oct 22)https://doi.org/10.1016/S2214-109X(19)30425-5Summary Full Text Full Text PDF PubMed Scopus (11) Google Scholar therefore represents a timely contribution towards filling this crucial research gap on the developmental trajectory of child survivors with developmental disabilities in LMICs beyond their 5th birthday. A cohort of 306 children with epilepsy or cognitive, vision, hearing, or motor impairments were identified from a baseline screening of 10 218 children aged 6–9 years recruited in rural Kenya and followed up every 4 to 6 months from June 1, 2001, to Aug 31, 2018, to determine all-cause mortality and the associated factors. These children were compared with 9912 controls from the screened population and an age-matched sample of 22 873 individuals from the general population. Premature mortality in children with neurological impairments was three to four times higher than controls and the general population (overall mortality rates per 100 000 person years of observation: 309·8 [95% CI 126·7–492·9] in children with neurological impairments, 80·8 [64·3–97·3] in controls, and 98·8 [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; and 3·13, 1·71–5·72; p<0·001, compared with the general population). This finding was statistically independent of the type or severity of impairment, and consistent with a report from the USA7Decouflé P Autry A Increased mortality in children and adolescents with developmental disabilities.Paediatr Perinat Epidemiol. 2002; 16: 375-382Crossref PubMed Scopus (41) Google Scholar that showed an observed-to-expected mortality ratio of almost three to one among older children with intellectual disability, cerebral palsy, epilepsy, vision impairment, or hearing impairment. Other population-based studies from high-income countries have also shown that older children with autism spectrum disorder and attention-deficit hyperactivity-disorder have higher rates of premature mortality compared with their peers without these conditions or the general population.8Schendel DE Overgaard M Christensen J et al.Association of psychiatric and neurologic comorbidity with mortality among persons with autism spectrum disorder in a Danish population.JAMA Pediatr. 2016; 170: 243-250Crossref PubMed Scopus (63) Google Scholar, 9Dalsgaard S Østergaard SD Leckman JF et al.Mortality in children, adolescents, and adults with attention deficit hyperactivity disorder: a nationwide cohort study.Lancet. 2015; 385: 2190-2196Summary Full Text Full Text PDF PubMed Scopus (389) Google Scholar Thus, the increased risk of premature mortality among children with disabilities is a global phenomenon that warrants concerted intervention. What are the causes and risk factors for premature death? Determining the cause-of-death especially among children with disabilities in an African setting is challenging because of cultural beliefs and scarce resources. In rural Kenya, autopsy reports were only available for five of the 11 children with disabilities and HIV/AIDS was the most common cause of death. Studies in LMICs have shown that many parents perceive severe disability as worse than death,4Bayat M The stories of ‘snake children’: killing and abuse of children with developmental disabilities in West Africa.J Intellect Disabil Res. 2015; 59: 1-10Crossref PubMed Scopus (23) Google Scholar and ironically, some families might even view premature death as a welcome relief because of the substantial lifetime costs of supporting disabled children without any social welfare benefits, especially in rural settings. In Abel and colleagues' study, children with developmental delay characterised by the inability to self-feed and severe malnutrition also had the highest risk of premature death.7Decouflé P Autry A Increased mortality in children and adolescents with developmental disabilities.Paediatr Perinat Epidemiol. 2002; 16: 375-382Crossref PubMed Scopus (41) Google Scholar A unique strength of this study was that children with disabilities were followed up for nearly two decades, periodically assessed, then compared with peers without disabilities and the general population. The overarching message is that children with disabilities have the added burden of potential premature death as well as the risks of suboptimal development and poorer school enrolment, compared with their peers without disabilities. Logistically, it is unlikely that such a cohort study can be readily replicated in all LMICs, also bearing in mind the restricted age group of this cohort. Yet, the findings from this small rural town in Kenya and similar studies might necessarily have to be extrapolated for the rest of the region to inform policy at the global level, typically using advanced modelling techniques.10Global Research on Developmental Disabilities CollaboratorsDevelopmental disabilities among children younger than 5 years in 195 countries and territories, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016.Lancet Glob Health. 2018; 6: e1100-e1121Summary Full Text Full Text PDF PubMed Scopus (263) Google Scholar Consistent with the disability-inclusive provisions of the Sustainable Development Goals, the evidence further underscores the need for priority attention incorporating deliverable targets for children with disabilities to equitably address their unique developmental challenges.3Olusanya BO de Vries PJ African Consortium of The Global Research on Developmental Disabilities CollaboratorsNurturing care for children with developmental disabilities: a moral imperative for sub-Saharan Africa.Lancet Child Adolesc Health. 2018; 2: 772-774Summary Full Text Full Text PDF PubMed Scopus (15) Google Scholar, 5WHOUNICEFThe World Bank GroupOperationalizing nurturing care for early childhood development: the role of the health sector alongside other sectors and actors.https://nurturing-care.org/wp-content/uploads/2019/07/Operationalizing-NC.pdfDate accessed: September 19, 2019Google Scholar These children and their families cannot afford to wait to get the attention they deserve. We declare no competing interests. Premature mortality in children aged 6–9 years with neurological impairments in rural Kenya: a cohort studyThe 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. Full-Text PDF Open Access