Hrev_master [Healthcare in Low-resource Settings 2014; 2:1559] [page 1] Public health and research funding for childhood neurodevelopmental disorders in Sub-Saharan Africa: a time to balance priorities Muideen O. Bakare,1 Kerim M. Munir,2 Mashudat A. Bello-Mojeed3 1Child and Adolescent Unit, Federal Neuropsychiatric Hospital, Enugu, Nigeria; 2Division of Developmental Medicine, Boston Children’s Hospital, Boston, MA, USA; 3Child and Adolescent Unit, Federal Neuropsychiatric Hospital, Lagos, Nigeria Abstract Sub-Saharan African (SSA) population con- sists of about 45% children, while in Europe and North America children population is 10- 15%. Lately, attention has been directed at mit- igating childhood infectious and communica- ble diseases to reduce under-five mortality. As the under-five mortality index in Sub-Saharan Africa has relatively improved over the last two decades, more Sub-Saharan African children are surviving beyond the age of five and, apparently, a sizeable percentage of this popu- lation would be living with one or more child- hood neurodevelopmental disorders (NDD). The distribution of child mental health service resources across the world is unequal. This manifests in the treatment gap of major child- hood onset mental health problems in SSA, with the gap being more pronounced for child- hood NDD. It is important to balance the pub- lic health focus and research funding priorities in Sub-Saharan Africa. We urgently need to define the burden of childhood NDD in the region for healthcare planning and policy for- mulation. Introduction Public health and research funding in Sub- Saharan Africa (SSA) has largely focused on communicable diseases, with less attention being paid to non-communicable diseases among the latter category NDD in children have a special place as they affect a major seg- ment of the population.1 This linkage in dispro- portionate increase in developmental delays and intellectual disabilities was once termed as new morbidity and was one of the impetus- es for the emergence of the special needs movement in the US.2 Many of these children are showing declines in cognitive functioning, delays in language skills, as well as poor motor and social skills. There is a need for urgent research to identify nodal points for early intervention.2 One possible explanation for the current lack of public health attention to childhood NDD in SSA may be due to lack of human resource capacities for evaluation and interventions for children with complex NDD. Capacity building in terms of public health and clinical services as well as provision of research funding in this area are of paramount importance at the present time. Neurodevelopmental disorders (NDD) are group of disorders arising from impairments in the developing brain and/or the central nerv- ous system. They are considered neurodevel- opmental in that by definition they originate during the developmental period, that is, dur- ing the prenatal, ante-natal, post-natal, infancy and early childhood periods. The disorders have varying degrees of associated burden on children, their families and their communities and almost always require multi-faceted serv- ices to address special educational, health care, social inclusion and rehabilitation needs. The NDD include intellectual developmental disorders with known genetic or metabolic eti- ologies, traumatic or congenital brain injuries including conditions such as cerebral palsy, as well as such prenatal exposures such as fetal alcohol syndrome, and disorders of social relat- edness such as autism spectrum disorders (ASD). Among the NDD of childhood, in particular, ASD has received great deal of attention in the US and Europe in the past decade. ASD com- prise a group of complex, lifelong, disorders that are now usually identifiable prior to 3 years of age. ASD is characterized by qualita- tive impairments in reciprocal social interac- tion, impairments in verbal and non-verbal communication skills and a restricted pattern of interest or behavior (WHO, 1992; APA, 1994).3,4 In SSA, children under the age of 15 years on average consist about 36.5% (Ghana) to 50% (Uganda) of the overall population depending on country concerned.5 These fig- ures contrast with under 15-year child popula- tion distribution in Ireland (21%), United States (20%), UK (17.3%), Netherlands (17%), Sweden (15.4%), Greece (14.2%), and Germany (13.3%). Europe and North America comprise about 15 to 20 percent of the total population (Figure 1).5 In SSA, the number of children that will go on to lead productive lives will therefore have an important impact not only in term of the quality of life of their own and their families, but will be of critical impor- tance for sustaining the economic and political development of the region. In view of the differences in health care pri- orities globally, public health and research funding policies in SSA had, to date, focused overwhelmingly on childhood communicable infectious diseases (e.g. pneumonia, diarrhea, malaria, HIV/AIDS) targeted towards reducing the rate of under-five mortality in the region in keeping with the Millennium Development Goals (MDG).6 Declining under-five mortality in Sub-Saharan Africa Over the last decades in SSA, efforts had been directed through multiplex public health and research policies to curtail the communi- cable diseases that contributed greatly to under-five morbidity and mortality. These efforts are yielding important fruits based on the present indicators of under-five mortality over the past two decades in the region.7 The efforts had been moving the SSA region closer to achieving reduction in child mortality rate as part of the MDG 4 (Figure 2). SSA region had achieved on the average about 30 percent reduction in under-five mor- tality rate between the period of 1990 and 2010, it had also achieved double in its average rate of reduction from 1.2 percent a year between the period of 1990 and 2000 compared to 2.4 percent a year between the period of 2000 and 2010 (Figure 3).7 In absolute terms, Healthcare in Low-resource Settings 2014; volume 2:1559 Correspondence: Muideen O. Bakare, Child and Adolescent Unit, Federal Neuropsychiatric Hospital, Chime Avenue, Enugu, Nigeria. Tel./Fax: +234.703.097.0079. E-mail: mobakare2000@yahoo.com Key words: public health, childhood neurodevel- opmental disorders, Sub-Saharan Africa. Acknowledgements: this work was partly support- ed by Fogarty International Center/NIH grants TW005807 and TW009248 (KMM). Contributions: all authors contributed to the con- ception of the idea behind this article and were involved in revising the manuscript. MOB wrote the initial draft of the manuscript. All authors read and approved the final draft of the manu- script. Received for publication: 10 April 2013. Revision received: 4 July 2013. Accepted for publication: 14 July 2013. This work is licensed under a Creative Commons Attribution 3.0 License (by-nc 3.0). ©Copyright M.O. Bakare et al., 2014 Licensee PAGEPress, Italy Healthcare in Low-resource Settings 2014; 2:1559 doi:10.4081/hls.2014.1559 Non -co mmerc ial us e o nly [page 2] [Healthcare in Low-resource Settings 2014; 2:1559] four countries in SSA region had achieved the greatest reduction world-wide with up to 60 percent reduction in under five mortality rate over the last two decades and more than 4.5 percent yearly rate reduction on the average between the period of 1990 and 2010. These SSA countries included Malawi, Liberia, Niger and Sierra Leone.7 Relative neglect of childhood neurodevelopmental disorders within the Sub-Saharan Africa public health framework While understandably communicable dis- eases and the attendant under-five mortality rate might have been great challenge to SSA region, current evidence suggests that there are ongoing substantial improvements in these indices.7 Going by the earlier observa- tion that onset of symptoms of ASD and other NDD often coincide with the period of under- five morbidity and mortality in SSA children,8,9 it is logical to think that with the improvement in under-five mortality index in the region, the prevalence of ASD and other childhood NDD will be on the increase and deserve a greater level of public health significance. Ironically however, ASD and other childhood NDD have not been given adequate attention in the SSA region in terms of public health focus and research funding.10,11 Likewise, the WHO mhGAP has not emphasized the importance of the childhood NDD, focusing on adulthood dis- orders such as depression, national policies and rights of people with mental health condi- tions (where childhood NDD has a minor part, despite the disproportionate population num- bers). To date, there has been no large scale epidemiological study of children to define the magnitude of the problem of ASD and other childhood NDD in the SSA region, which can be used for the purpose of planning and policy formulation in the region.10-13 Autism spectrum disorders and other neurodevelopmental dis- orders in Africa It is well established that symptoms of ASD occur among African children contrary to earli- er notions.14 Despite worldwide reports of increase prevalence of ASD, there is no large scale community based epidemiological data on ASD in Africa. A recent study on ASD among African children with intellectual and NDD suggests an increase in prevalence of ASD in Africa.13 There is a need for community based epidemiological study of ASD in Africa to con- firm this trend. The onset of ASD symptoms among African children coincide with the peri- od of less than five (and often 3) years of age that is characterized by vulnerabilities of African children to physical illness and infec- tious diseases associated with neurological consequences.15 There is an over-representa- tion of non-verbal cases of ASD among African children presenting to orthodox medical facili- ties.16 The lack of or limited expressive lan- guage ability could be related to late interven- tions, resulting from late presentation and identification of ASD among African children.16 In Africa, it has been observed that ASD is rarely diagnosed exclusively of intellectual dis- abilities and there is a wide gap between age of onset of symptoms and diagnosis of ASD in Africa.10 Therefore identification and diagno- sis of ASD has been observed to be late among African children.12 Possible factors identified from the literature that are associated with late identification of ASD in Africa include: poor knowledge and awareness about ASD; cul- tural beliefs and practices; tortuous pathway to care/ help-seeking behavior; inadequate num- ber of trained personnel; inadequate health- care facilities.16 There is scarcity of interven- tion programs for children with ASD and other NDD in Africa. The few available services are very expensive with huge unaffordable cost to most of the parents of affected children.12 The changing paradigm In a review of pattern of funding for health in Africa between the year 2000 and 2002, com- municable diseases have received the majority of funding, 52%. This is followed by Nutrition and Food Security that has ranked second in funding, 28%. Child and Adolescent Health and Survival, and Women’s Health and Rights col- lectively received just about 3% of funding for this period.17 The present pattern of public health funding in Africa may need to be reviewed because of the changing paradigm outlined in this report. We need to move to at least an equal emphasis on non-communicable disorders affecting children that now survive well beyond 5 years of age and likely to suffer lifespan effects with ensuing long term eco- nomic and societal gains. As noted earlier, the onset of ASD symptoms among African children coincide with the peri- od of less than five years that is characterized by vulnerabilities of African children to physi- cal illness as well as infectious diseases asso- ciated with neurological consequences that effect brain development10 Recent evidence suggests that with improvement in the index of under-five mortality in SSA and gradual progress being made towards achieving MDG 4, more children would be surviving beyond the age of five years and sizeable percentage of this population would be experiencing the bur- den of living with one or more NDD.10,18 The pertinent question is Is the SSA region getting braze-up for this challenges? The answer at this time is a resounding No. The way forward There is unequal distribution of mental health service resources across the world, which has manifested in a mental health treat- ment gap (mhGAP) which itself shows a spe- cific imbalance for identification and treat- ment of major childhood mental disorders in SSA.19,20 The unequal distribution of child men- Brief Report Figure 1. Contrast in West Africa and Western Europe population pyramids showing children population distribution. Figure 3. Many regions globally have reduced the under-five mortality rates by at least 50 percent between 1990 and 2010, with Sub-Saharan Africa achieving an average of 30% reduction. Figure 2. Though slowly, Sub-Saharan Africa is making progress towards reduc- tion in under-five mortality and achieving the Millennium Development Goal 4. Non -co mmerc ial us e o nly [Healthcare in Low-resource Settings 2014; 2:1559] [page 3] tal health service resources as it affects coun- tries in SSA is more pronounced for childhood NDD.21 In line with MDG 6 which aims at achieving the objective of combating HIV/AIDS, malaria, and other diseases, research in the area of childhood NDD in SSA region is highly justified. Furthermore, despite a disproportionately lower percentage of chil- dren in the general population the research on childhood NDD, and in particular, research on ASD, in Europe and North America has seen a remarkable surge. This also needs to be justi- fied as an urgent policy perspective in SSA. There is a distributive ethical need to redress the imbalance that is reflected by the much larger population of children in SSA compared to that in Europe and North America.22 Conclusions The right time is now to conduct large scale epidemiological studies on ASD and other child- hood NDD among SSA children. This is justified for the purpose of planning and policy formula- tion in the region that is urgently needed to address the burden of the problem on children that are surviving well beyond age 5 and to reduce the stigma upon families and communi- ties at large. These objectives cannot be achieved without reviewing the present public health and research funding policies in the region. Finally, there is a need for major interna- tional NGOs to emphasize research in childhood NDD in the SSA context. Such a prioritization needs also to be reflected in the policies of the WHO Mental Health and Substance Abuse Department, as well as early childhood develop- ment policies of UNICEF, among others, to begin to understand the complex neurodevelopmental conditions affecting children’s cognitive and social development. This needs to be achieved within a mental health paradigm, rather than a fantasy that somehow mental health does not exist and public health is all about prenatal care, maternal support, nutrition, immunization and prevention of communicable diseases. In order to effect lasting influences across the lifespan we need to prepare earlier on in the lifecycle for the identification of complex NDD and to pro- vide cost effective early educational and behav- ioral interventions, as well as parent and teacher training strategies, social inclusion, and com- munity empowerment. This is the time to bal- ance priorities in public health and research funding, emphasizing childhood NDD in SSA. References 1. Maher D, Ford N, Uwin N. Priorities for developing countries in the global response to non-communicable diseases. Global Health 2012;8:8-14. 2. Borkowski JG, Whitman TL, Passino AW, et al. Unraveling the “new morbidity”: ado- lescent parenting and developmental delays. 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