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.

Epilepsy among the older population of sub-Saharan Africa: Analysis of the global burden of disease database.

INTRODUCTION: Epilepsy is considered one of the most burdensome neurologic diseases by the World Health Organization due to the high risk of morbidity and mortality. Few studies have investigated the epidemiology of idiopathic epilepsy in Sub-Saharan Africa (SSA). This study aims to characterize the disease burden of epilepsy among the older population in SSA via a large international database. METHODS: Descriptive epidemiological data from the Global Burden of Disease (GBD) database was collected for idiopathic epilepsy in all regions of SSA. The "older" population was defined as 55 years of age and above. The variables of interest included mortality, incidence, prevalence, and disability-adjusted life years (DALYs) rates per one hundred thousand populations. RESULTS: The average mortality rate was highest in Western SSA (6.34 per 100,000), and all regions were significantly higher than the global average (p < 0.001). DALYs and incidence rates of idiopathic epilepsy in all regions of SSA were significantly higher than the global averages (p < 0.01). Globally, the older population had a significantly higher mortality rate than the younger population (2.78 vs 1.62, respectively; p < 0.01). The older population had a higher mortality rate than the younger population in each region of SSA (p < 0.01). Conversely, for DALYs, the younger population had a higher disease burden than the older population globally and in each region of SSA (p < 0.01). CONCLUSION: This study is the first to examine the epidemiologic profile of idiopathic epilepsy in the older population in SSA. Our results indicate that, when compared with the global population, older adults in SSA suffer a greater disease burden and mortality. This study reports the immense need for increased resources and awareness regarding epilepsy in the elderly population of Africa.

Treatment of seizures in the neonate: Guidelines and consensus-based recommendations-Special report from the ILAE Task Force on Neonatal Seizures.

Seizures are common in neonates, but there is substantial management variability. The Neonatal Task Force of the International League Against Epilepsy (ILAE) developed evidence-based recommendations about antiseizure medication (ASM) management in neonates in accordance with ILAE standards. Six priority questions were formulated, a systematic literature review and meta-analysis were performed, and results were reported following the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) 2020 standards. Bias was evaluated using the Cochrane tool and risk of Bias in non-randomised studies - of interventions (ROBINS-I), and quality of evidence was evaluated using grading of recommendations, assessment, development and evaluation (GRADE). If insufficient evidence was available, then expert opinion was sought using Delphi consensus methodology. The strength of recommendations was defined according to the ILAE Clinical Practice Guidelines development tool. There were six main recommendations. First, phenobarbital should be the first-line ASM (evidence-based recommendation) regardless of etiology (expert agreement), unless channelopathy is likely the cause for seizures (e.g., due to family history), in which case phenytoin or carbamazepine should be used. Second, among neonates with seizures not responding to first-line ASM, phenytoin, levetiracetam, midazolam, or lidocaine may be used as a second-line ASM (expert agreement). In neonates with cardiac disorders, levetiracetam may be the preferred second-line ASM (expert agreement). Third, following cessation of acute provoked seizures without evidence for neonatal-onset epilepsy, ASMs should be discontinued before discharge home, regardless of magnetic resonance imaging or electroencephalographic findings (expert agreement). Fourth, therapeutic hypothermia may reduce seizure burden in neonates with hypoxic-ischemic encephalopathy (evidence-based recommendation). Fifth, treating neonatal seizures (including electrographic-only seizures) to achieve a lower seizure burden may be associated with improved outcome (expert agreement). Sixth, a trial of pyridoxine may be attempted in neonates presenting with clinical features of vitamin B6-dependent epilepsy and seizures unresponsive to second-line ASM (expert agreement). Additional considerations include a standardized pathway for the management of neonatal seizures in each neonatal unit and informing parents/guardians about the diagnosis of seizures and initial treatment options.

Mothers' perceptions and experiences of caring for sick newborns in Newborn Care Units in public hospitals in Eastern Uganda: a qualitative study.

INTRODUCTION: Mothers' participation in the care of their sick newborns in Newborn Care Units (NCUs) has been linked to several advantages including earlier discharge, fewer complications, better mother-baby bonding, and an easier transition to home after discharge. This study aimed to understand mothers' perceptions and experiences while participating in the care of their sick newborns in the NCUs to inform interventions promoting mothers' participation in public health facilities in Uganda. METHODS: We conducted an exploratory qualitative study comprised of 18 in-depth interviews with mothers caring for their newborns in two NCUs at a Regional Referral and General hospital in Eastern Uganda between April and May 2022. The interviews were audio-recorded and then transcribed. For analysis, we used a thematic analysis approach. RESULTS: The fear of losing their baby was an overarching theme that underlay mothers' perceptions, actions, and experiences in the NCU. Mothers' confidence in the care provided to their babies was based on their baby's outcomes. For example, when mothers saw almost immediate improvement after treatment, they felt more confident in the care than when this was not the case. Furthermore, mothers considered it essential that health care providers responded quickly in an emergency. Moreover, they expressed concerns about a lack of control over their personal space in the crowded NCU. Additionally, caring for babies in these settings is physically and financially taxing, with mothers requiring the combined efforts of family members to help them cope. CONCLUSION: This study shows that for mothers of sick newborns in the NCU, the baby's survival is the first concern and the basis of mothers' confidence in the quality of care provided. Efforts to improve parental participation in NCUs must focus on lowering the costs incurred by families in caring for a baby in the NCU, addressing privacy and space concerns, leveraging the family's role, and avoiding compromising the quality of care in the process of participation.

Nutritional status and growth of children and adolescents with and without cerebral palsy in eastern Uganda: A longitudinal comparative analysis.

There is a need to understand the growth and burden of malnutrition in children with cerebral palsy (CP) in order to design appropriate inclusive nutrition strategies. We compared the nutritional status and four-year longitudinal growth of a population-based cohort of children and adolescents (C&A) with CP (n = 97; 2-17 years; 55/42 M/F), and an age and sex matched group without CP (n = 91; 2-17y; 50/41 M/F) in rural Uganda. The cohorts were assessed in 2015 and 2019 for weight, height, social demographic characteristics, and feeding related factors. Nutritional status was determined using the World Health Organization (WHO) Z-scores. Wilcoxon sign rank and Mann-Whitney tests were used to test within and between group differences. Multivariable linear regression was used to determine predictors of the change in growth. Approximately two thirds (62/97 (64%)) of C&A with CP were malnourished (with <-2SD in any of the WHO Z-scores), especially those with feeding difficulties (OR = 2.65; P = 0.032), and those who needed to be fed (OR = 3.8; P = 0.019). Both the CP and non-CP groups deviated negatively from the WHO reference growth curve for height, with a significantly slower growth in the CP group (median change score of height-for-age Z score (HAZ) between assessments = -0.80(-1.56, 0.31), p<0.01), than the non-CP group (median HAZ change score = -0.27(-0.92,0.34, p = 0.034). There was a statistically significant group difference in the median HAZ change score between the CP and non-CP groups (z = -2.21, p = 0.026). Severity of motor impairment measured by the Gross Motor Function Classification System (GMFCS-level) correlated negatively (r = -1.37,95%CI -2.67, -0.08) with the change in HAZ scores among the CP group. Children and adolescents with severe motor impairments exhibit an increased risk of malnutrition and growth retardation compared to their age matched peers without CP, which underscores the need to develop inclusive community-based nutrition strategies for children with cerebral palsy.

Use of Integrative, Complementary, and Alternative Medicine in Children with Epilepsy: A Global Scoping Review.

(1) Background: Epilepsy is one of the most common chronic neurological disorders in childhood. Complementary and alternative medicine (CAM) use is highly prevalent in patients with epilepsy. Despite CAM's widespread and increasing popularity, its prevalence, forms, perceived benefits, and potential risks in pediatric epilepsy are rarely explored. (2) Methods: We performed a scoping review of the available literature on the use of CAM in pediatric epilepsy. (3) Results: Overall, global cross-sectional studies showed a variable degree of CAM usage among children with epilepsy, ranging from 13 to 44% in prevalence. Popular types of CAMs reported were supplements, cannabis products, aromatherapy, herbal remedies, dietary therapy, massage therapy, and prayer. Families often report that CAM is effective, although there are limited objective measures of this. Potential risks lie in the use of CAM, such as herbal remedies, and/or unregulated, contaminated, or unpurified products. Studies also underscored inadequate patient-physician discussions regarding CAM. (4) Conclusions: A better understanding of this topic would aid clinicians in guiding patients/families on the use of CAM. Further studies on the efficacy of the different types of CAM used, as well as potential side effects and drug interactions are needed.

A Goal-Directed Program for Wheelchair Use for Children and Young People with Cerebral Palsy in Uganda: An Explorative Intervention Study.

In this exploratory study, we investigate whether goal-directed intervention for wheelchairs can increase the activities of daily living for children and young people with cerebral palsy (CP) when implemented in rural Uganda. Thirty-two children and young people with CP (aged 3-18 years) participated in a home-visit intervention program, which included donating wheelchairs and setting individual goals. Goal achievement, frequency of wheelchair use, condition of wheelchairs, and caregivers' perspectives were collected by interviews at 6-10 month after the start of intervention and the after three years. Our result show that most wheelchairs were in good condition and frequently used after 6-10 month with 83% goal achievement (132/158 goals; mean 4.3 (range 0-7). The caregivers reported several advantages (e.g., the child being happier) and few disadvantages (e.g., poor design and durability). At the three-year follow-up, only eleven wheelchairs were still used by 23 available participants (seven deceased and two moved). The children achieved 60% of their goals (32/53 goals mean 2.9; range 1-5). This demonstrates that the goal-directed intervention program for wheelchairs can be successfully implemented in a low-income setting with a high rate of goal achievement and frequent wheelchair use, facilitating participation. However, maintenance services are crucial to obtain sustainable results.

"Walking the Journey Together": Creating a unique learning module in provider-patient communication for the care of epilepsy in Uganda.

OBJECTIVE: This report documents the creation of a practical communication skills module about epilepsy care, specifically targeted at first-line care providers who treat patients with epilepsy in Uganda. METHODS: Our team conducted semi-structured interviews, utilizing Zoom video conferencing, with Ugandan physicians specializing in epilepsy care. Our interview guide promoted a semi-structured conversational interview that explored aspects related to developing a patient-provider relationship, how epilepsy is described in a culturally appropriate manner, exploration of alternative treatments, the impact of the stigma of epilepsy, and facilitators and barriers to antiepileptic drug treatment adherence. Each interview was then transcribed, and an inductive thematic content analysis approach was utilized to facilitate the development of thematic communication and care subcategories. The resulting PowerPoint presentation included numerous short audio clips of our Ugandan experts suggesting effective ways of communicating with patients and their families. RESULTS: Our interviews with experts yielded valuable results to customize the WHO mhGAP v2.0 training program to be culturally relevant and effective in Uganda. The educational content consisted of topic summaries integrated with audio clips taken directly from our interviews with the Ugandan providers. Six themes emerged that would serve as the outline for the communication module we co-created with our Ugandan colleagues: The six major themes of the module included: (1) Greeting the patient, (2) Getting the story, (3) Traditional healers, (4) Stigma of epilepsy, (5) Explaining epilepsy, and (6) Treatment adherence. CONCLUSIONS: The communications skills teaching module addresses the most critical aspects of communicating with patients and families living with epilepsy. The format of the presentation, which includes the written and spoken words of experts in epilepsy care, provides a practical approach to the provider-patient interaction, and confronts the stigma associated with this disease. This formatting highlights an effective way for international groups to co-create content in a culturally effective manner.

Evaluation of a tailored epilepsy training program for healthcare providers in Uganda.

OBJECTIVE: This study evaluated an epilepsy training program for healthcare workers that was designed to improve their knowledge of epilepsy, its treatment, and its psychosocial effects. METHODS: This single group, before and after survey was conducted in three regional referral hospitals in Uganda. Healthcare workers participated in a 3-day epilepsy training program and were assessed immediately prior to and following the program using a 39-item epilepsy knowledge questionnaire. Pretest to posttest changes and acceptability ratings were analyzed. RESULTS: Twenty healthcare workers from each of our three study hospitals (N = 60) participated in the study. The average age of the participants was 39.9 years (SD = 9.6). Female participants constituted 45% of the study population. There was a significant improvement in the knowledge of healthcare workers about epilepsy following the training (t = 7.15, p < 0.001). Improvement was seen across the three sub-scores of general knowledge about epilepsy, assessment and diagnosis of epilepsy, and management of epilepsy. Subgroup analysis showed that both high and low baseline scorers showed significant training gains. CONCLUSIONS: The study suggested that our training program was effective in improving the knowledge of health workers about epilepsy and that participants had favorable impressions of the program. Further work is needed to determine if the knowledge is retained over time and if the change in knowledge translates into a change in clinical practice.

Participation of children and young people with cerebral palsy in activities of daily living in rural Uganda.

AIM: To compare the participation attendance and involvement of children and young people with and without cerebral palsy (CP) in a low-resource area of Uganda. METHOD: Eighty-two children and young people with CP aged 6 to 22 years (49 males, 33 females) and 81 age- and sex-matched peers without CP (6 to 22 years; 48 males, 33 females) participated in this population-based, cross-sectional study. Data on attendance and involvement in 20 home and community activities were obtained using Picture My Participation, an instrument intended to measure participation in children with disabilities, particularly in low- and middle-income countries. Non-parametric statistical methods were used to assess between-group differences. Effect size estimates were calculated. RESULTS: Pooled attendance across all activities was lower in children and young people with CP than in children and young people without CP (p < 0.001) and for each activity item (p = 0.004 to p < 0.001). The effect sizes for each activity were 0.2 to 0.7. Between-group differences were larger for community activities than for home activities. Pooled involvement across all activities was less in the group with CP (p < 0.001) and for each activity (p = 0.014 to p < 0.001). The effect sizes for each activity were 0.2 to 0.5. Children and young people in Gross Motor Function Classification System (GMFCS) levels I and II had higher attendance (p < 0.001) and involvement (p = 0.023) than those in GMFCS levels III to V. INTERPRETATION: Participation of young people living with CP in Uganda was restricted, especially for community activities. There is a need to identify context-specific participation barriers and develop strategies to overcome them. WHAT THIS PAPER ADDS: Children and young people with cerebral palsy (CP) attended all activities less than their peers without CP. Differences in attendance were larger for community-based activities than home activities. When attending activities, children and young people with CP were less involved than their peers. Children and young people with milder impairments attended less frequently than their peers without CP. Children and young people with milder impairments attended more frequently than their peers with severe impairments.

Validity and test-retest reliability of the Ugandan version of the Pediatric Evaluation of Disability Inventory (PEDI-UG) in children and youth with cerebral palsy.

BACKGROUND: Validity of the Ugandan version of the Pediatric Evaluation of Disability Inventory (PEDI-UG) was previously investigated on typically developing children. This study aimed to investigate the validity, test-retest reliability and minimal detectable change (MDC) of the PEDI-UG in children and youth (C&Y) with cerebral palsy (CP). METHOD: A cross-sectional study design with 118 C&Y with CP (44.7% girls) aged 10 months-22.5 years were included in the study; 37 of them completed the PEDI-UG twice to investigate test-retest reliability, determined by calculating the intraclass correlation coefficient (ICC). Additionally, data from 249 typically developing children were used for differential item functioning (DIF) analysis. The validity of the PEDI-UG was investigated by Rasch analysis. The Kruskal-Wallis test and Spearman's correlation coefficient were calculated to investigate associations between PEDI-UG scores and external classification systems. RESULTS: The principal component analysis of residuals indicated unidimensionality in all domains. The ICC values were excellent (0.98-0.99), and the MDCs were less than 6 and 13 (on a 0-100 scale) for the functional skills and caregiver assistance parts, respectively. The four-category caregiver assistance rating scale fulfilled the criteria for the analysis of rating scale functioning. In total, 78 of 189 items in the functional skills domain and two items in the caregiver assistance domain demonstrated DIF between C&Y with CP and TD children. The Kruskal-Wallis test (p < 0.05) and Spearman's correlation (coefficients of -0.93 to -0.78) supported the validity of PEDI-UG. CONCLUSION: The current diagnose-specific version of PEDI-UG demonstrates evidence for validity as a measure of ability in C&Y with CP in Uganda and other similar settings, being a promising tool for use in clinical practice and research. Conversion tables and MDC values are provided to facilitate clinical adoption of the measure.

Common infectious and parasitic diseases as a cause of seizures: geographic distribution and contribution to the burden of epilepsy

This educational review article aims to provide information on the central nervous system (CNS) infectious and parasitic diseases that frequently cause seizures and acquired epilepsy in the developing world. We explain the difficulties in defining acute symptomatic seizures, which are common in patients with meningitis, viral encephalitis, malaria, and neurocysticercosis, most of which are associated with increased mortality and morbidity, including subsequent epilepsy. Geographic location determines the common causes of infectious and parasitic diseases in a particular region. Management issues encompass prompt treatment of acute symptomatic seizures and the underlying CNS infection, correction of associated predisposing factors, and decisions regarding the appropriate choice and duration of antiseizure therapy. Although healthcare provider education, to recognize and diagnose seizures and epilepsy related to these diseases, is a feasible objective to save lives, prevention of CNS infections and infestations is the only definitive way forward to reduce the burden of epilepsy in developing countries.

Cerebral palsy and developmental intellectual disability in children younger than 5 years: Findings from the GBD-WHO Rehabilitation Database 2019.

Objective: Children with developmental disabilities are associated with a high risk of poor school enrollment and educational attainment without timely and appropriate support. Epidemiological data on cerebral palsy and associated comorbidities required for policy intervention in global health are lacking. This paper set out to report the best available evidence on the global and regional prevalence of cerebral palsy (CP) and developmental intellectual disability and the associated "years lived with disability" (YLDs) among children under 5 years of age in 2019. Methods: We analyzed the collaborative 2019 Rehabilitation Database of the Global Burden of Disease (GBD) Study and World Health Organization for neurological and mental disorders available for 204 countries and territories. Point prevalence and YLDs with 95% uncertainty intervals (UI) are presented. Results: Globally, 8.1 million (7.1-9.2) or 1.2% of children under 5 years are estimated to have CP with 16.1 million (11.5-21.0) or 2.4% having intellectual disability. Over 98% resided in low-income and middle-income countries (LMICs). CP and intellectual disability accounted for 6.5% and 4.5% of the aggregate YLDs from all causes of adverse health outcomes respectively. African Region recorded the highest prevalence of CP (1.6%) while South-East Asia Region had the highest prevalence of intellectual disability. The top 10 countries accounted for 57.2% of the global prevalence of CP and 62.0% of the global prevalence of intellectual disability. Conclusion: Based on this Database, CP and intellectual disability are highly prevalent and associated with substantial YLDs among children under 5 years worldwide. Universal early detection and support services are warranted, particularly in LMICs to optimize school readiness for these children toward inclusive education as envisioned by the United Nations' Sustainable Development Goals.

Post-Infectious Autoimmunity in the Central (CNS) and Peripheral (PNS) Nervous Systems: An African Perspective.

The direct impact and sequelae of infections in children and adults result in significant morbidity and mortality especially when they involve the central (CNS) or peripheral nervous system (PNS). The historical understanding of the pathophysiology has been mostly focused on the direct impact of the various pathogens through neural tissue invasion. However, with the better understanding of neuroimmunology, there is a rapidly growing realization of the contribution of the innate and adaptive host immune responses in the pathogenesis of many CNS and PNS diseases. The balance between the protective and pathologic sequelae of immunity is fragile and can easily be tipped towards harm for the host. The matter of immune privilege and surveillance of the CNS/PNS compartments and the role of the blood-brain barrier (BBB) and blood nerve barrier (BNB) makes this even more complex. Our understanding of the pathogenesis of many post-infectious manifestations of various microbial agents remains elusive, especially in the diverse African setting. Our exploration and better understanding of the neuroimmunology of some of the infectious diseases that we encounter in the continent will go a long way into helping us to improve their management and therefore lessen the burden. Africa is diverse and uniquely poised because of the mix of the classic, well described, autoimmune disease entities and the specifically "tropical" conditions. This review explores the current understanding of some of the para- and post-infectious autoimmune manifestations of CNS and PNS diseases in the African context. We highlight the clinical presentations, diagnosis and treatment of these neurological disorders and underscore the knowledge gaps and perspectives for future research using disease models of conditions that we see in the continent, some of which are not uniquely African and, where relevant, include discussion of the proposed mechanisms underlying pathogen-induced autoimmunity. This review covers the following conditions as models and highlight those in which a relationship with COVID-19 infection has been reported: a) Acute Necrotizing Encephalopathy; b) Measles-associated encephalopathies; c) Human Immunodeficiency Virus (HIV) neuroimmune disorders, and particularly the difficulties associated with classical post-infectious autoimmune disorders such as the Guillain-Barré syndrome in the context of HIV and other infections. Finally, we describe NMDA-R encephalitis, which can be post-HSV encephalitis, summarise other antibody-mediated CNS diseases and describe myasthenia gravis as the classic antibody-mediated disease but with special features in Africa.

Health facility readiness to care for high risk newborn babies for early childhood development in eastern Uganda.

BACKGROUND: The neonatal mortality rate in Uganda has barely changed over the past decades, estimated at 28/1000 and 27/1000 live births in 2006 and 2016 respectively. The survivors have a higher risk of developing neurodevelopmental disabilities (NDD) due to brain insults from perinatal complications related to poor quality of health services during pregnancy, around the time of birth, and during the postnatal period. This study aimed to assess health facility readiness to care for high risk newborn babies in order to inform programming that fosters early childhood development in eastern Uganda. METHODS: A cross sectional study of 6 hospitals and 10 higher level health centers that offer comprehensive maternal and newborn care was carried out in February 2020 in eastern Uganda. A World Health Organization Service Availability and Readiness Assessment tool (SARA) was adapted and used to assess the health facility readiness to manage maternal and neonatal conditions that are related to NDD. In addition, 201 mothers of high risk newborn babies were interviewed on their satisfaction with health services received. Readiness scores were derived from percentage average facilities with available infrastructure and essential medical commodities to manage neonatal complications. Descriptive statistics were computed for client satisfaction with service provision, and p values used to compare private not for profit to public health facilities. RESULTS: There was limited availability in numbers and skilled human resource especially the neonatal nurses. Hospitals and health centers scored least in preterm and hypothermia care, with averages of 38% and 18% respectively. The highest scores were in essential newborn care, with readiness of 78% and 85% for hospitals and health centers, followed by resuscitation at 78% and 77%, respectively. There were no guidelines on positive interaction with newborn babies to foster neurodevelopment. The main cause of admission to neonatal care units was birth asphyxia followed by prematurity, indicative of intrapartum care challenges. The overall client satisfaction with health services was higher in private not for profit facilities at 91% compared to public hospitals at 73%, p = 0.017. CONCLUSION: Health facility readiness was inadequate in management of preterm complications. Efforts should, therefore, be geared to improving availability of inputs and quality of emergency obstetric and newborn care in order to manage high risk newborns and reduce the burden of NDD in this setting.

Functional development in children with cerebral palsy in Uganda: population-based longitudinal cohort study.

AIM: To follow the functional development of a population-based cohort of children with cerebral palsy (CP) in rural Uganda and compare their development with the developmental trajectories of children from high-income countries (HIC). METHOD: Eighty-one children (33 females, 48 males) aged 2 to 17 years (mean 8y 6mo, SD 4y 6mo) with CP were initially assessed in 2015 and then 4 years later using the 66-item Gross Motor Function Measure (GMFM-66), Pediatric Evaluation of Disability Inventory, Ugandan version (PEDI-UG), and functional classification systems. We calculated actual and reference scores (level of deviation from the developmental trajectories in HIC). A Wilcoxon signed-rank test was used for statistical analyses. RESULTS: Children and young people with CP in Uganda exhibited no differences in scores between the first and second assessments for the GMFM-66 and PEDI-UG mobility skills, whereas they exhibited increased PEDI-UG social function (p<0.001) and self-care skills scores (p<0.001). Reference scores were more negative at the second assessment than at the first for the GMFM-66 (p=0.002) and PEDI-UG mobility (p=0.036) but not for PEDI-UG self-care. The increased difference in reference scores over the 4 years was primarily driven by younger children (2-5y) and children with milder impairments. INTERPRETATION: The increased difference in reference scores between assessments suggests that children with CP in Uganda develop motor skills at a slower rate than peers in HIC. Limited access to health care and rehabilitation likely contributed to the lower scores and slower rate of development.

Early Intervention for Children Aged 0 to 2 Years With or at High Risk of Cerebral Palsy: International Clinical Practice Guideline Based on Systematic Reviews.

Importance: Cerebral palsy (CP) is the most common childhood physical disability. Early intervention for children younger than 2 years with or at risk of CP is critical. Now that an evidence-based guideline for early accurate diagnosis of CP exists, there is a need to summarize effective, CP-specific early intervention and conduct new trials that harness plasticity to improve function and increase participation. Our recommendations apply primarily to children at high risk of CP or with a diagnosis of CP, aged 0 to 2 years. Objective: To systematically review the best available evidence about CP-specific early interventions across 9 domains promoting motor function, cognitive skills, communication, eating and drinking, vision, sleep, managing muscle tone, musculoskeletal health, and parental support. Evidence Review: The literature was systematically searched for the best available evidence for intervention for children aged 0 to 2 years at high risk of or with CP. Databases included CINAHL, Cochrane, Embase, MEDLINE, PsycInfo, and Scopus. Systematic reviews and randomized clinical trials (RCTs) were appraised by A Measurement Tool to Assess Systematic Reviews (AMSTAR) or Cochrane Risk of Bias tools. Recommendations were formed using the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) framework and reported according to the Appraisal of Guidelines, Research, and Evaluation (AGREE) II instrument. Findings: Sixteen systematic reviews and 27 RCTs met inclusion criteria. Quality varied. Three best-practice principles were supported for the 9 domains: (1) immediate referral for intervention after a diagnosis of high risk of CP, (2) building parental capacity for attachment, and (3) parental goal-setting at the commencement of intervention. Twenty-eight recommendations (24 for and 4 against) specific to the 9 domains are supported with key evidence: motor function (4 recommendations), cognitive skills (2), communication (7), eating and drinking (2), vision (4), sleep (7), tone (1), musculoskeletal health (2), and parent support (5). Conclusions and Relevance: When a child meets the criteria of high risk of CP, intervention should start as soon as possible. Parents want an early diagnosis and treatment and support implementation as soon as possible. Early intervention builds on a critical developmental time for plasticity of developing systems. Referrals for intervention across the 9 domains should be specific as per recommendations in this guideline.

Akwenda intervention programme for children and youth with cerebral palsy in a low-resource setting in sub-Saharan Africa: protocol for a quasi-randomised controlled study.

INTRODUCTION: Cerebral palsy (CP) is the most common childhood-onset motor disorder accompanied by associated impairments, placing a heavy burden on families and health systems. Most children with CP live in low/middle-income countries with little access to rehabilitation services. This study will evaluate the Akwenda CP programme, a multidimensional intervention designed for low-resource settings and aiming at improving: (1) participation, motor function and daily activities for children with CP; (2) quality of life, stress and knowledge for caregivers; and (3) knowledge and attitudes towards children with CP in the communities. METHODS: This quasi-randomised controlled clinical study will recruit children and youth with CP aged 2-23 years in a rural area of Uganda. Children will be allocated to one of two groups with at least 44 children in each group. Groups will be matched for age, sex and motor impairment. The intervention arm will receive a comprehensive, multidimensional programme over a period of 11 months comprising (1) caregiver-led training workshops, (2) therapist-led practical group sessions, (3) provision of technical assistive devices, (4) goal-directed training and (5) community communication and advocacy. The other group will receive usual care. The outcome of the intervention will be assessed before and after the intervention and will be measured at three levels: (1) child, (2) caregiver and (3) community. Standard analysis methods for randomised controlled trial will be used to compare groups. Retention of effects will be examined at 12-month follow-up. ETHICS AND DISSEMINATION: The study has been approved by the Uganda National Council for Science and Technology (SS 5173) and registered in accordance with WHO and ICMJE standards. Written informed consent will be obtained from caregivers. Results will be disseminated among participants and stakeholders through public engagement events, scientific reports and conference presentations. TRIAL REGISTRATION NUMBER: Pan African Clinical Trials Registry (PACTR202011738099314) Pre-results.

Prevalence and factors associated with behavioural problems in children with epilepsy attending Mulago hospital, Uganda: A cross-sectional study.

PURPOSE: To determine the prevalence of behavioural problems and the associated factors in children with epilepsy (CWE). METHODS: This was a cross-sectional study conducted at Mulago National Referral Hospital, Kampala, Uganda, from December 2019 to May 2020. A total of 300 CWE aged 6 to 17 years were consecutively enrolled and assessed for behavioural problems using the Strengths and Difficulties Questionnaire. We obtained data on the associated factors by using pretested structured questionnaires, the Rosenberg Self-Esteem Scale, the Kilifi Stigma Scale of Epilepsy, the Morisky medication adherence scale and the Tumaini Child Health Screener for childhood disabilities.  Simple logistic regression and multivariate analysis was done to determine the associated factors while adjusting for the presence of neurodevelopmental disorders and childhood disabilities. RESULTS: Behavioural problems were detected in 108/300 CWE (36%) with more internalizing (28%) than externalizing (21%) behaviour scores noted. The odds of behavioural problems increased with the presence of co-morbid neurodevelopmental disorders or childhood disabilities (cOR: 5.42, p-value < 0.001). Factors associated with occurrence of behavioural problems were high stigma perception (aOR: 4.06, p-value < 0.001) and being seizure-free in the last six months (aOR: 3.43, p-value =0.031) while being an adolescent (aOR: 0.33, p=0.001) lessened the risk. CONCLUSIONS: Behavioural problems occur in more than a third of CWE. They are more in the internalizing domain than in the externalizing domain. Their odds increase with high perceived stigma and in the first six months of seizure control.