Strategies for addressing the needs of children with or at risk of developmental disabilities in early childhood by 2030: a systematic umbrella review.

BACKGROUND: There are over 53million children worldwide under five with developmental disabilities who require effective interventions to support their health and well-being. However, challenges in delivering interventions persist due to various barriers, particularly in low-income and middle-income countries. METHODS: We conducted a global systematic umbrella review to assess the evidence on prevention, early detection and rehabilitation interventions for child functioning outcomes related to developmental disabilities in children under 5 years. We focused on prevalent disabilities worldwide and identified evidence-based interventions. We searched Medline, Embase, PsychINFO, and Cochrane Library for relevant literature from 1st January 2013 to 14th April 2023. A narrative synthesis approach was used to summarise the findings of the included meta-analyses. The results were presented descriptively, including study characteristics, interventions assessed, and outcomes reported. Further, as part of a secondary analysis, we presented the global prevalence of each disability in 2019 from the Global Burden of Disease study, identified the regions with the highest burden and the top ten affected countries. This study is registered with PROSPERO, number CRD42023420099. RESULTS: We included 18 reviews from 883 citations, which included 1,273,444 children under five with or at risk of developmental disabilities from 251 studies across 30 countries. The conditions with adequate data were cerebral palsy, hearing loss, cognitive impairment, autism spectrum disorder (ASD) and attention-deficit/hyperactivity disorder. ASD was the most prevalent target disability (n = 8 reviews, 44%). Most reviews (n = 12, 67%) evaluated early interventions to support behavioural functioning and motor impairment. Only 33% (n = 10/30) of studies in the reviews were from middle-income countries, with no studies from low-income countries. Regarding quality, half of reviews were scored as high confidence (n = 9/18, 50%), seven as moderate (39%) and two (11%) as low. CONCLUSIONS: We identified geographical and disability-related inequities. There is a lack of evidence from outside high-income settings. The study underscores gaps in evidence concerning prevention, identification and intervention, revealing a stark mismatch between the available evidence base and the regions experiencing the highest prevalence rates of developmental disabilities.

Cerebral palsy in African paediatric populations: A scoping review.

AIM: To review the epidemiology and outcomes of African children with cerebral palsy (CP) over a 21-year period. METHOD: The PubMed, Scopus, and Web of Science online databases were searched for original research on African children with CP aged 18 years and younger published from 2000 to 2021. RESULTS: A total of 1811 articles underwent review against explicit criteria; 93 articles were selected for inclusion in the scoping review. The reported prevalence of CP ranged from 0.8 to 10 per 1000 children. Almost half had perinatal risk factors, but up to 26% had no identifiable risk factor. At least one-third of children with CP had one or more comorbidities, most commonly epilepsy, intellectual disability, and malnutrition. African children with CP demonstrated excess premature mortality approximately 25 times that of the general population, predominantly from infections. Hospital-based and younger populations had larger proportions of children with severe impairments. African children with CP had inadequate access to care and education, yet showed functional improvements compared to controls for all evaluated interventions. INTERPRETATION: The prevalence of CP in Africa remains uncertain. African children with CP have different risk profiles, greater premature mortality, and more severe functional impairments and comorbidities compared to the Global North. Several barriers prevent access to optimal care. Larger African studies on validated and effective interventions are needed.

A Randomized Trial of Phototherapy with Filtered Sunlight in African Neonates.

BACKGROUND: Sequelae of severe neonatal hyperbilirubinemia constitute a substantial disease burden in areas where effective conventional phototherapy is unavailable. We previously found that the use of filtered sunlight for the purpose of phototherapy is a safe and efficacious method for reducing total bilirubin. However, its relative safety and efficacy as compared with conventional phototherapy are unknown. METHODS: We conducted a randomized, controlled noninferiority trial in which filtered sunlight was compared with conventional phototherapy for the treatment of hyperbilirubinemia in term and late-preterm neonates in a large, urban Nigerian maternity hospital. The primary end point was efficacy, which was defined as a rate of increase in total serum bilirubin of less than 0.2 mg per deciliter per hour for infants up to 72 hours of age or a decrease in total serum bilirubin for infants older than 72 hours of age who received at least 5 hours of phototherapy; we prespecified a noninferiority margin of 10% for the difference in efficacy rates between groups. The need for an exchange transfusion was a secondary end point. We also assessed safety, which was defined as the absence of the need to withdraw therapy because of hyperthermia, hypothermia, dehydration, or sunburn. RESULTS: We enrolled 447 infants and randomly assigned 224 to filtered sunlight and 223 to conventional phototherapy. Filtered sunlight was efficacious on 93% of treatment days that could be evaluated, as compared with 90% for conventional phototherapy, and had a higher mean level of irradiance (40 vs. 17 µW per square centimeter per nanometer, P<0.001). Temperatures higher than 38.0°C occurred in 5% of the infants receiving filtered sunlight and in 1% of those receiving conventional phototherapy (P<0.001), but no infant met the criteria for withdrawal from the study for reasons of safety or required an exchange transfusion. CONCLUSIONS: Filtered sunlight was noninferior to conventional phototherapy for the treatment of neonatal hyperbilirubinemia and did not result in any study withdrawals for reasons of safety. (Funded by the Thrasher Research Fund, Salt Lake City, and the National Center for Advancing Translational Sciences of the National Institutes of Health; Clinical Trials.gov number, NCT01434810.).

Severe neonatal hyperbilirubinaemia is frequently associated with long hospitalisation for emergency care in Nigeria.

AIM: This study investigated the frequency and predictors of a long hospital stay (LHS) for severe neonatal hyperbilirubinaemia in Nigeria. METHODS: Length of stay (LOS) for severe hyperbilirubinaemia was examined among neonates consecutively admitted to the emergency department of a children's hospital in Lagos from January 2013 to December 2014. The median LOS was used as the cut-off for LHS. Multivariate logistic regression determined the independent predictors of LHS based on demographic and clinical factors significantly associated with the log-transformed LOS in the bivariate analyses. RESULTS: We enrolled 622 hyperbilirubinaemic infants with a median age of four days (interquartile range 2-6 days) and 276 (44.4%) had LHS based on the median LOS of five days. Regardless of their birth place, infants were significantly more likely to have LHS if they were admitted in the first two days of life (p = 0.008) - especially with birth asphyxia - or had acute bilirubin encephalopathy (p = 0.001) and required one (p = 0.020) or repeat (p = 0.022) exchange transfusions. Infants who required repeat exchange transfusions had the highest odds for LHS (odds ratio 4.98, 95% confidence interval 1.26-19.76). CONCLUSION: Severe hyperbilirubinaemia was frequently associated with long hospitalisation in Nigeria, especially if neonates had birth asphyxia or required exchange transfusions.

Predictors of Repeat Exchange Transfusion for Severe Neonatal Hyperbilirubinemia.

OBJECTIVES: To identify the predictors of repeat exchange transfusion among infants with severe hyperbilirubinemia. DESIGN: Retrospective cross-sectional study. SETTING: A referral children's hospital in inner-city Lagos, Nigeria. PATIENTS: Infants who received exchange transfusion for severe hyperbilirubinemia from January 2012 to December 2014. INTERVENTION: None. MEASUREMENTS AND MAIN RESULTS: The predictors of repeat exchange transfusion were identified among all infants who had at least one exchange transfusion using multivariable logistic regression. A total of 352 infants with mean peak total serum bilirubin of 26.32 ± 7.96 mg/dL received exchange transfusion; of these, 49 (13.9%) with mean peak total serum bilirubin of 32.85 ± 10.54 mg/dL had repeat exchange transfusion. More than two thirds of infants who received exchange transfusion and repeat exchange transfusion were male, and at least one third had ABO incompatibility. No infant had more than two exchange transfusions. The mean age of admission was approximately 5 days (range, 1-14 d). Peak total serum bilirubin greater than or equal to 30 mg/dL (odds ratio, 2.88; 95% CI, 1.46-5.70) and acute bilirubin encephalopathy (odds ratio, 2.37; 95% CI, 1.18-4.77) were predictive of repeat exchange transfusion. CONCLUSIONS: Acute bilirubin encephalopathy and excessive total serum bilirubin levels at least 30 mg/dL are predictive of repeat exchange transfusion. A risk assessment framework that combines total serum bilirubin levels, acute bilirubin encephalopathy status, and risk factors of neurotoxicity should be considered for the timely detection and monitoring of infants at risk of repeat exchange transfusion.

Irradiance Decay in Fluorescent and Light-emitting Diode-based Phototherapy Devices: A Pilot Study.

We set out to determine the rate of decline of irradiance for fluorescent tube (FT) and light-emitting diode (LED) phototherapy devices in resource-limited settings where routine irradiance monitoring is uncommon. Irradiance levels (µW/cm(2)/nm) were measured weekly using BiliBlanket(®) II Meter on three FT-based and two LED-based phototherapy devices over a 19 week period. The two LED devices showed stable irradiance levels and did not require any lamp changes. The three FT-based devices showed rapid decline in irradiance, and all required three complete lamp exchanges approximately every 5-6 weeks. FT-based devices are associated with more rapid decline in irradiance to sub-therapeutic levels and require more frequent lamp changes than LED devices. Clinicians should be alert to the maintenance requirements of the phototherapy devices available in their settings to ensure efficacy of treatment.

A modified Bilirubin-induced neurologic dysfunction (BIND-M) algorithm is useful in evaluating severity of jaundice in a resource-limited setting.

BACKGROUND: Severe neonatal jaundice with associated acute bilirubin encephalopathy occurs frequently in low- and middle-income countries, where advanced diagnostic technology is in short supply. In an effort to facilitate the physical diagnosis of acute bilirubin encephalopathy, we pilot-tested a modified bilirubin induced neurologic dysfunction scoring algorithm in a group of pediatric trainees (residents) and their mentors (consultants) in a resource-constrained setting. METHODS: Jaundiced Nigerian infants were examined by consultant and resident pediatricians. The modified bilirubin induced neurologic dysfunction score assigned by residents was compared with the clinical diagnosis of acute bilirubin encephalopathy by expert consultants. Demographic information was obtained. Known risk factors were also evaluated among infants with and without acute bilirubin encephalopathy in addition to exploratory analyses. Data were analyzed by Statistical Analysis System; statistical significance was set at p < 0.05. RESULTS: Three hundred and thirty three paired modified bilirubin induced neurologic dysfunction scores (333) were analyzed and showed excellent agreement (weighted Kappa coefficient 0.7969) between residents and consultants. A modified bilirubin induced neurologic dysfunction score greater than or equal to 3 was highly predictive of a clinical diagnosis of acute bilirubin encephalopathy, with sensitivity of 90.7%, specificity of 97.7%, positive predictive value of 88.9%, and negative predictive value of 98.2%. Exposure to mentholated products was strongly associated with increased risk of acute bilirubin encephalopathy among those with known glucose-6-phosphate dehydrogenase deficiency (odds ratio = 73.94; 95% confidence interval = 5.425-infinity) as well as among those whose G6PD phenotype was unknown (odds ratio = 25.88; 95% confidence interval = 2.845-235.4). CONCLUSIONS: The modified bilirubin induced neurologic dysfunction score for neonatal jaundice can be assigned reliably by both residents and experienced pediatricians in resource-limited settings as reflected in the algorithm's sensitivity and specificity. It may be useful for predicting the development and severity of acute bilirubin encephalopathy in neonates.

Management of late-preterm and term infants with hyperbilirubinaemia in resource-constrained settings.

Hyperbilirubinaemia is a ubiquitous transitional morbidity in the vast majority of newborns and a leading cause of hospitalisation in the first week of life worldwide. While timely and effective phototherapy and exchange transfusion are well proven treatments for severe neonatal hyperbilirubinaemia, inappropriate or ineffective treatment of hyperbilirubinaemia, at secondary and tertiary hospitals, still prevails in many poorly-resourced countries accounting for a disproportionately high burden of bilirubin-induced mortality and long-term morbidity. As part of the efforts to curtail the widely reported risks of frequent but avoidable bilirubin-induced neurologic dysfunction (acute bilirubin encephalopathy (ABE) and kernicterus) in low and middle-income countries (LMICs) with significant resource constraints, this article presents a practical framework for the management of late-preterm and term infants (≥ 35 weeks of gestation) with clinically significant hyperbilirubinaemia in these countries particularly where local practice guidelines are lacking. Standard and validated protocols were followed in adapting available evidence-based national guidelines on the management of hyperbilirubinaemia through a collaboration among clinicians and experts on newborn jaundice from different world regions. Tasks and resources required for the comprehensive management of infants with or at risk of severe hyperbilirubinaemia at all levels of healthcare delivery are proposed, covering primary prevention, early detection, diagnosis, monitoring, treatment, and follow-up. Additionally, actionable treatment or referral levels for phototherapy and exchange transfusion are proposed within the context of several confounding factors such as widespread exclusive breastfeeding, infections, blood group incompatibilities and G6PD deficiency, which place infants at high risk of severe hyperbilirubinaemia and bilirubin-induced neurologic dysfunction in LMICs, as well as the limited facilities for clinical investigations and inconsistent functionality of available phototherapy devices. The need to adjust these levels as appropriate depending on the available facilities in each clinical setting and the risk profile of the infant is emphasised with a view to avoiding over-treatment or under-treatment. These recommendations should serve as a valuable reference material for health workers, guide the development of contextually-relevant national guidelines in each LMIC, as well as facilitate effective advocacy and mobilisation of requisite resources for the optimal care of infants with hyperbilirubinaemia at all levels.

The global burden of disabling hearing impairment: a call to action.

At any age, disabling hearing impairment has a profound impact on interpersonal communication, psychosocial well-being, quality of life and economic independence. According to the World Health Organization's estimates, the number of people with such impairment increased from 42 million in 1985 to about 360 million in 2011. This last figure includes 7.5 million children less than 5 years of age. In 1995, a "roadmap" for curtailing the burden posed by disabling hearing impairment was outlined in a resolution of the World Health Assembly. While the underlying principle of this roadmap remains valid and relevant, some updating is required to reflect the prevailing epidemiologic transition. We examine the traditional concept and grades of disabling hearing impairment - within the context of the International Classification of Functioning, Disability and Health - as well as the modifications to grading that have recently been proposed by a panel of international experts. The opportunity offered by the emerging global and high-level interest in promoting disability-inclusive post-2015 development goals and disability-free child survival is also discussed. Since the costs of rehabilitative services are so high as to be prohibitive in low- and middle-income countries, the critical role of primary prevention is emphasized. If the goals outlined in the World Health Assembly's 1995 resolution on the prevention of hearing impairment are to be reached by Member States, several effective country-level initiatives - including the development of public-private partnerships, strong leadership and measurable time-bound targets - will have to be implemented without further delay.

À tout âge, la déficience auditive invalidante affecte profondément la communication entre les personnes, le bien-être psychosocial, la qualité de vie et l'indépendance économique. Selon les estimations de l'Organisation mondiale de la Santé, le nombre de personnes souffrant d'une telle déficience a augmenté de 42 millions en 1985 à 360 millions en 2011. Ce dernier chiffre comprend 7,5 millions d'enfants âgés de moins de 5 ans. En 1995, une «feuille de route¼ pour réduire le fardeau de la déficience auditive invalidante a été énoncée dans une résolution de l'Assemblée mondiale de la santé. Bien que le principe sous-jacent de cette feuille de route reste valide et pertinent, une mise à jour s'avère nécessaire afin de refléter la transition épidémiologique prédominante. Nous examinons le concept traditionnel et les classes de déficience auditive invalidante ­ dans le cadre de la Classification internationale du fonctionnement, du handicap et de la santé ­ ainsi que les modifications à apporter au classement, qui ont été récemment proposées par un panel d'experts internationaux. Nous discutons également de l'opportunité offerte par l'intérêt mondial naissant et à un très haut niveau pour la promotion des objectifs de développement pour l'après-2015, qui tiennent compte de la question du handicap et de la survie des enfants sans handicap. Comme les coûts des services de réadaptation sont élevés au point d'être prohibitifs dans les pays à revenu faible et intermédiaire, nous insistons sur le rôle critique de la prévention primaire. Si les objectifs énoncés dans la résolution de 1995 de l'Assemblée mondiale de la santé sur la prévention de la déficience auditive doivent être réalisés par les États membres, plusieurs initiatives efficaces prises au niveau de chaque pays ­ y compris le développement de partenariats public-privé, un leadership fort et des objectifs mesurables à atteindre dans des délais déterminés ­ devront être mises en œuvre sans plus attendre.

La deficiencia auditiva incapacitante tiene un impacto enorme en la comunicación interpersonal, el bienestar psicosocial, la calidad de vida y la independencia económica a cualquier edad. De acuerdo con los cálculos de la Organización Mundial de la Salud, el número de personas con dicha discapacidad aumentó de 42 millones en 1985 a unos 360 millones en 2011. Esta última cifra incluye 7,5 millones de niños con una edad inferior a los 5 años. En 1995 se preparó en una resolución de la Asamblea Mundial de la Salud el borrador de una «hoja de ruta¼ para reducir la carga que supone la deficiencia auditiva incapacitante. Aunque el principio subyacente de esta hoja de ruta sigue siendo válido y pertinente, es necesario actualizarla para reflejar la transición epidemiológica prevaleciente. Examinamos el concepto y los niveles tradicionales de deficiencia auditiva incapacitante ­ dentro del contexto de la Clasificación Internacional del Funcionamiento, de la Discapacidad y de la Salud - así como las modificaciones en la clasificación recientemente propuestas por un grupo de expertos internacionales. También se discute la oportunidad que ofrece el interés creciente a nivel mundial en la promoción de la discapacidad, incluidos los objetivos de desarrollo tras 2015 y la supervivencia de los niños sin discapacidad. Dado que los costes de los servicios de rehabilitación son tan elevados que resultan prohibitivos en los países con ingresos bajos y medios, se hace hincapié en el papel fundamental de la prevención primaria. Si los Estados Miembros deben alcanzar los objetivos planteados en la resolución de la Asamblea Mundial de la Salud de 1995 acerca de la prevención de la discapacidad auditiva, es necesario que se pongan en marcha, sin más demora, una serie de iniciativas nacionales eficaces, entre las que se encontrarían el desarrollo de asociaciones público-privadas, un liderazgo sólido y metas con plazos concretos y mensurables.

Maternal satisfaction with a novel filtered-sunlight phototherapy for newborn jaundice in Southwest Nigeria.

BACKGROUND: In many resource-limited settings, the availability of effective phototherapy for jaundiced infants is frequently hampered by lack of, or inadequate resources to acquire and maintain conventional electric-powered phototherapy devices. This study set out to ascertain maternal experience and satisfaction with a novel treatment of infants with significant hyperbilirubinemia using filtered sunlight phototherapy (FSPT) in a tropical setting with irregular access to effective conventional phototherapy. METHODS: A cross-sectional satisfaction survey was conducted among mothers of jaundiced infants treated with FSPT in an inner-city maternity hospital in Lagos, Nigeria from November 2013 to March 2014. Mothers' experience during treatment was elicited with a pretested questionnaire consisting of closed and open-ended items. Satisfaction was rated on a five-point Likert scale. Correlates of overall maternal satisfaction were explored with descriptive and inferential non-parametric statistics. RESULTS: A total of 191 mothers were surveyed, 77 (40%) of whom had no prior knowledge of neonatal jaundice. Maternal satisfaction was highest for quality of nursing care received (mean: 4.72 ± 0.55, median: 5[IQR: 5-5]) and lowest for physical state of the test environment (mean: 3.85 ± 0.74, median: 4[IQR: 3-4]). The overall rating (mean: 4.17 ± 0.58, median: 4[IQR: 4-5]) and the observed effect of FSPT on the babies (mean: 4.34 ± 0.58, 4[IQR: 4-5]) were quite satisfactory. FSPT experience was significantly correlated with the adequacy of information received (p < 0.0005), test environment (p = 0.002) and the observed effect of FSPT on the child (p < 0.0005). Almost all mothers (98.4%) indicated willingness to use FSPT in future or recommend it to others, although some (30 or 15.7%) disliked the idea of exposing newborns to sunlight. CONCLUSIONS: Mothers of jaundiced newborns in this population are likely to be satisfied with FSPT where it is inevitable as an alternative to conventional electric-powered phototherapy. Adequate information, good test environment and friendly nursing care must be ensured for satisfactory maternal experience.

Addressing the burden of neonatal hyperbilirubinaemia in countries with significant glucose-6-phosphate dehydrogenase deficiency.

UNLABELLED: Glucose-6-phosphate dehydrogenase (G6PD) deficiency is an established worldwide risk factor for severe hyperbilirubinaemia. This literature review examined the pattern and management of severe hyperbilirubinaemia in low- and middle-income countries (LMICs) where G6PD deficiency was 10% or more and found that it was frequently associated with neonatal mortality and, or, neurodevelopmental disorders. CONCLUSION: Low- and middle-income countries need to pay urgent attention to G6PD deficiency to curtail the preventable burden of jaundice-related morbidity, mortality and disability.

Pattern and predictors of maternal care-seeking practices for severe neonatal jaundice in Nigeria: a multi-centre survey.

BACKGROUND: Nigeria is frequently associated with disproportionately high rates of severe neonatal jaundice (NNJ) underpinned by widespread Glucose-6-phosphate dehydrogenase (G6PD) deficiency. Timely and appropriate treatment of NNJ is crucial for preventing the associated morbidity and neuro-developmental sequelae. Since mothers are likely to be the first mostly to observe the onset of severe illness in their newborns, we set out to identify the pattern and predictors of maternal care-seeking practices for NNJ in three culturally-distinct settings in Nigeria. METHODS: A multi-centre study was conducted among women attending antenatal clinics in Abuja, Lagos and Port Harcourt from October 2011 to April 2012 using a pretested questionnaire. Predictors of awareness of NNJ, accurate recognition of NNJ, use of potentially harmful therapies and preference for future hospital treatment were determined with multivariate logistic regressions. RESULTS: Of the 488 participants drawn from the three locations, 431 (88.3%) reported awareness of NNJ, predominantly (57.8%) attributable to professional health workers. A total of 309 (63.3%) mothers with prior knowledge of NNJ claimed they could recognise NNJ, but 270 (87.4%) from this group accurately identified the features of NNJ. Multiparous mothers (Adjusted odds ratio, AOR:4.05; 95% CI:1.75-9.36), those with tertiary education (AOR:1.91; CI:1.01-3.61), and those residing in Lagos (AOR:2.96; CI:1.10-7.97) were more likely to have had prior knowledge of NNJ. Similarly, multiparous mothers (AOR:2.38; CI:1.27-4.46) and those with tertiary education (AOR:1.92; CI:1.21-3.05) were more likely to recognise an infant with jaundice accurately. Mothers educated by health workers were 40% less likely to resort to potentially harmful treatment for NNJ (AOR:0.60; CI:0.39-0.92) but more likely to seek hospital treatment in future for an infant suspected with jaundice (AOR:1.88; CI:1.20-2.95). CONCLUSIONS: Women with tertiary education and multiparous mothers who attend routine antenatal clinics are more likely than less educated women, to be associated with appropriate care-seeking practices for infants with NNJ regardless of the socio-cultural setting. Systematic efforts by professional health workers are warranted, as part of routine antenatal care, to engage other groups of mothers especially those likely to indulge in self-use of potentially harmful therapies.

Early childhood development strategy for the world's children with disabilities.

Early childhood is foundational for optimal and inclusive lifelong learning, health and well-being. Young children with disabilities face substantial risks of sub-optimal early childhood development (ECD), requiring targeted support to ensure equitable access to lifelong learning opportunities, especially in low- and middle-income countries. Although the Sustainable Development Goals, 2015-2030 (SDGs) emphasise inclusive education for children under 5 years with disabilities, there is no global strategy for achieving this goal since the launch of the SDGs. This paper explores a global ECD framework for children with disabilities based on a review of national ECD programmes from different world regions and relevant global ECD reports published since 2015. Available evidence suggests that any ECD strategy for young children with disabilities should consists of a twin-track approach, strong legislative support, guidelines for early intervention, family involvement, designated coordinating agencies, performance indicators, workforce recruitment and training, as well as explicit funding mechanisms and monitoring systems. This approach reinforces parental rights and liberty to choose appropriate support pathway for their children. We conclude that without a global disability-focussed ECD strategy that incorporates these key features under a dedicated global leadership, the SDGs vision and commitment for the world's children with disabilities are unlikely to be realised.