Epidemiology of cerebral palsy in low- and middle-income countries: preliminary findings from an international multi-centre cerebral palsy register.

AIM: To describe the epidemiology of cerebral palsy (CP) in children from low- and middle-income countries (LMICs) using data from the Global Low- and Middle-Income Country CP register (GLM-CPR). METHOD: The GLM-CPR is a multi-country initiative that combines and compares data from children with CP (<18y) in LMICs. Children with CP are registered after detailed neurodevelopmental assessment by a multidisciplinary medical team using a harmonized protocol. Data are collected on agreed core variables. Descriptive analyses are completed to report findings from participating countries. RESULTS: Between January 2015 and May 2019, 2664 children were recruited from Bangladesh, Nepal, Indonesia, and Ghana (mean age [SD] at assessment: 7y 8mo [4y 8mo], 95% confidence interval 7y 6mo-7y 11mo; male [n=1615] 60.6%, female [n=1049] 39.4%). Overall, 86.6% children acquired CP prenatally and perinatally (e.g. preterm birth, birth asphyxia, neonatal encephalopathy). Median age at CP diagnosis was 3 years. Moreover, 79.2% children had spastic CP and 73.3% were classified in Gross Motor Function Classification System levels III to V. Notably, 47.3% of children never received rehabilitation services (median age at receiving rehabilitation services was 3y; 12.7% received assistive devices) and 75.6% of school-age children had no access to education. INTERPRETATION: Population-based data show that the proportion of severe cases of CP is very high in LMICs. Children with CP in LMICs lack access to rehabilitation and educational services and a large proportion of children have potentially preventable risk factors, for example, birth asphyxia and neonatal infections. Delayed diagnosis, severe motor impairments, and lack of rehabilitation in most children call for urgent action to identify preventive opportunities and promote early diagnosis and intervention for children with CP in LMICs. What this paper adds The proportion of severe cases of cerebral palsy (CP) is very high in rural low- and middle-income countries (LMICs). Children with CP in LMICs lack access to rehabilitation and educational services. A large proportion of children with CP in LMICs have potentially preventable risk factors.

Epidemiology of cerebral palsy among children in Ghana.

Background: The epidemiology of cerebral palsy (CP) is poorly described in Ghana. These data are crucial for evidence-based intervention for children with CP in the country. Objectives: We aimed to describe the epidemiology of CP among children in Ghana. Method: We established the first institution-based register of children with CP in Ghana (Ghana CP Register-GCPR). Children with confirmed CP aged < 18 years were registered following a detailed neurodevelopmental assessment. Socio-demographics, risk factors, predominant motor type and topography, gross motor function classification system (GMFCS), associated impairments, education and rehabilitation status were documented. Results: Between October 2018 and February 2020, 455 children were registered (mean [standard deviation {s.d.}] age at assessment: 5.9 [4.1] years). Preterm birth and low birthweight were reported in 52.0% and 21.1% children respectively. Most children (79.6%) had a pre- or perinatally acquired CP and the mean (s.d.) age of CP diagnosis was 22.2 (21.6) months. Overall, 55.9% of children had spastic tri- or quadriplegia, 60.5% had GMFCS level III-V and 70.3% had ≥ 1 associated impairment. However, 20.5% had never received rehabilitation services and 69.6% of school-aged children in the GCPR were not enrolled in schools. Conclusion: The study findings indicate a high burden of severe motor and associated impairment among children with CP in Ghana which highlights the need for tailored interventions to improve health and well-being of children with CP in the country. Contribution: The study highlights the need for interventions to improve functional outcome, health and well-being of children with CP in Ghana.

Nutritional status of children with cerebral palsy in Ghana.

Background: Limited knowledge on nutritional epidemiology in Ghanaian children with Cerebral Palsy (CP) necessitates a comprehensive investigation for an improved understanding of malnutrition in this population. Objectives: We aimed to describe the epidemiology of malnutrition among children with CP in Ghana. Methods: The study used data collected as part of the Ghana CP Register (GCPR). The GCPR is an institution-based surveillance of children with CP aged < 18 years in Ghana. Between October 2018 and April 2020, N = 455 children with CP were registered. Data were collected on (i) weight, length or height, mid-upper-arm-circumference of children with CP; (ii) socio-demographic characteristics; (iii) motor type and topography, gross motor function classification system level (GMFCS); (iv) associated impairments; (v) educational and rehabilitation status for each child. Descriptive and bivariate analyses were performed. Results: Mean and standard deviation age of the registered children at assessment was 5.9 ± 4.1 years, and 42.1% were female. Two-thirds of the children had ≥ one form of undernutrition (underweight or severely underweight: 38.9%, stunted or severely stunted: 51.2%, thin or severely thin: 23.8%). In the adjusted analysis, low maternal education, GMFCS-IV, speech impairment and epilepsy significantly increased the odds of undernutrition among participating children (aOR: 2.6 [95% CI:1.3-5.4]; 2.2 [95% CI:1.0-4.8]; 2.0 [95% CI:1.1-3.6]; 2.9 [95% CI:1.1-7.5] respectively). Conclusions: The high malnutrition rate indicates an urgent need for nutrition interventions and translational research to improve nutritional status and prevent adverse outcomes among children with CP in Ghana. Contribution: Our study contributes important data and a framework to develop guidelines and evidence-based interventions for children with CP in Ghana.

Predictors of Rehabilitation Service Utilisation among Children with Cerebral Palsy (CP) in Low- and Middle-Income Countries (LMIC): Findings from the Global LMIC CP Register.

BACKGROUND: We assessed the rehabilitation status and predictors of rehabilitation service utilisation among children with cerebral palsy (CP) in selected low- and middle-income countries (LMICs). METHODS: Data from the Global LMIC CP Register (GLM-CPR), a multi-country register of children with CP aged <18 years in selected countries, were used. Descriptive and inferential statistics (e.g., adjusted odds ratios) were reported. RESULTS: Between January 2015 and December 2019, 3441 children were registered from Bangladesh (n = 2852), Indonesia (n = 130), Nepal (n = 182), and Ghana (n = 277). The proportion of children who never received rehabilitation was 49.8% (n = 1411) in Bangladesh, 45.8% (n = 82) in Nepal, 66.2% (n = 86) in Indonesia, and 26.7% (n = 74) in Ghana. The mean (Standard Deviation) age of commencing rehabilitation services was relatively delayed in Nepal (3.9 (3.1) year). Lack of awareness was the most frequently reported reason for not receiving rehabilitation in all four countries. Common predictors of not receiving rehabilitation were older age at assessment (i.e., age of children at the time of the data collection), low parental education and family income, mild functional limitation, and associated impairments (i.e., hearing and/or intellectual impairments). Additionally, gender of the children significantly influenced rehabilitation service utilisation in Bangladesh. CONCLUSIONS: Child's age, functional limitation and associated impairments, and parental education and economic status influenced the rehabilitation utilisation among children with CP in LMICs. Policymakers and service providers could use these findings to increase access to rehabilitation and improve equity in rehabilitation service utilisation for better functional outcome of children with CP.

Epidemiology of Malnutrition among Children with Cerebral Palsy in Low- and Middle-Income Countries: Findings from the Global LMIC CP Register.

BACKGROUND: This study aimed to describe the epidemiology of malnutrition among children with cerebral palsy (CP) in low- and middle-income countries (LMICs). METHODS: Data from children with confirmed CP aged <18 years registered into the Global LMIC CP Register (GLM CPR) from Bangladesh, Indonesia, Nepal, and Ghana were included. Anthropometric measurements were collected, and nutritional status was determined following the WHO guidelines. Descriptive statistics and adjusted logistic regression were used to describe the nutritional status and identify predictors of malnutrition. RESULTS: Between January 2015 and December 2020, 3619 children with CP were registered into the GLM CPR (median age at assessment: 7.0 years, 39% female). Overall, 72-98% of children from Bangladesh, Indonesia, Nepal, and Ghana had at least one form of undernutrition. The adjusted analysis showed, older age, low maternal education, spastic tri/quadriplegia, and Gross Motor Functional Classification System (GMFCS) levels III-V were significant predictors of underweight and stunting among children with CP in Bangladesh. In Nepal, female children, GMFCS III-V had higher odds of underweight and stunting. In Ghana, low maternal education was significantly associated with underweight, whereas older age and the presence of associated impairments were the significant predictors of stunting among children with CP. Having a GMFCS of III-V increased the odds of being underweight among children in Indonesia; however, no predictors were identified for stunting, as nearly all children with CP registered from Indonesia were stunted. CONCLUSION: Most children with CP in GLM CPR had undernutrition. Maternal education and moderate-to-severe motor impairment (GMFCS III-V) were significant predictors. Practical nutrition education to mothers/caregivers and management guidelines according to the motor severity using local resources could improve the nutritional outcome of children with CP in LMICs.