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.

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 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.

Nutritional status of children with cerebral palsy in remote Sumba Island of Indonesia: a community-based key informants study.

AIM: To assess the burden and underlying factors of malnutrition among children with cerebral palsy (CP) in the remote Sumba Island, Indonesia. METHODS: This is a community-based key informant (KI) method survey of children with CP in the southwest regency of Sumba Island, Indonesia (child population∼152 471). Children with suspected CP identified by trained community volunteers (KIs) underwent a detailed neurodevelopmental assessment by a multidisciplinary medical assessment team to confirm diagnosis of CP. Anthropometric measurements were taken, z scores were calculated, and nutritional status was determined following the World Health Organization guideline. Descriptive analyses were performed, multivariable linear regression model was fitted to identify potential predictors of malnutrition. RESULTS: One hundred and thirty children with CP aged <18 years were included in the study. The majority were severely underweight (78.8%) and severely stunted (85.9%). Severe malnutrition was overrepresented among young children, children who had spastic tri/quadriplegia, Gross Motor Function Classification System levels III-V, had at least one associated impairment, speech impairment and/or swallowing difficulties. Age and presence of visual impairment were found to be significantly associated with weight-for-age z score (i.e., underweight) whereas, epilepsy was significantly associated with the height-for-age z score (i.e., stunting) when adjusted for other covariates. CONCLUSIONS: The substantial-high burden of malnutrition among children with CP in remote Sumba Island highlights their vulnerability to poor health-related outcomes. There is an urgent need for nutritional rehabilitation services to avert such consequences among children with CP in low and middle-income countries like Indonesia.Implications for rehabilitationMalnutrition among children with cerebral palsy (CP) is alarmingly high in the remote Sumba island of Indonesia.Children with severe gross motor function limitations or spastic tri/quadriplegia had the most severe malnutrition.There is an urgent need for rehabilitation services including nutrition and feeding interventions for children with CP in low and middle-income countries like Indonesia.

Epidemiology of cerebral palsy in Sumba Island, Indonesia.

AIM: To define the epidemiology, clinical characteristics, and rehabilitation status of children with cerebral palsy (CP) in Sumba Island, Indonesia. METHOD: A community-based key informant method survey among children (aged <18y) with CP was conducted between March and August 2017. Children with suspected CP underwent detailed neurodevelopmental assessment by a multidisciplinary medical team. Socio-demographic characteristics, aetiology, motor type, motor severity, associated impairments, educational, and rehabilitation status were documented. RESULTS: There were 130 children with clinically confirmed CP. The mean age at assessment was 8 years 11 months and 43.8% (n=57) of the children were female. The mean age at CP diagnosis was 6 years 5 months. Of these children, 46.9% (n=61) had post-neonatally acquired CP, most frequently because of vaccine-preventable infectious encephalopathy (73.8%, n=45). In total, 80.8% (n=105) had a predominantly spastic motor type of CP and 83.8% (n=109) were classified in Gross Motor Functional Classification System levels III to V. A total of 77.7% (n=101) had at least one associated impairment (speech 77.5%, intellectual 29.2%, visual 13.8%, hearing 20.0%, and epilepsy 13.5%). And 66.2% (n=86) had never received rehabilitation services. INTERPRETATION: Post-neonatally acquired CP was common in this setting. Addressing preventable post-neonatally acquired risk factors for CP should be a public health priority. Earlier identification and diagnosis of CP would also provide new opportunities for early intervention and targeted rehabilitation services.

The epidemiology of childhood blindness and severe visual impairment in Indonesia.

BACKGROUND: The magnitude of blindness among children in Indonesia is unknown. In this study, we aimed to define the magnitude and aetiology of childhood blindness in two parts of Indonesia. METHOD: Children aged 0-15 years, identified through key informant method and from special schools and community-based rehabilitation programme in Sumba and Yogyakarta, were assessed following WHO protocol and definitions for ophthalmological assessment and classification of visual impairment and blindness among children. RESULTS: Out of 195 children assessed, 113 had blindness/severe visual impairment (BL/SVI), 48 had visual impairment (VI) and 34 had no VI. 43.4% children with BL/SVI were female.The main anatomical site of BL/SVI was lens (n=35, 31.0%), followed by retina (n=13, 11.5%) and cornea (n=9, 8.0%). Among the known aetiologies, childhood factors predominated (n=14, 12.4%), followed by hereditary diseases (n=12, 10.6%) where parental consanguinity was found among 33.3% (n=4) of them. Overall, 77.8% (n=88) had avoidable causes of BL/SVI: 69.0% (n=78) treatable and 8.8% (n=10) preventable causes.The estimated prevalence of BL/SVI was 0.25 (95% CI 0.19 to 0.32) and 0.23 (95% CI 0.18 to 0.29) per 1000 children in Sumba and Yogyakarta, respectively. The estimated prevalence of cataract was 0.07 per 1000 children (95% CI 0.04 to 0.12) in Sumba and 0.05 per 1000 children (95% CI 0.03 to 0.09) in Yogyakarta. Based on our conservative estimates, there are 17 241 children with BL/SVI in Indonesia; 4270 are blind due to cataract. CONCLUSION: The magnitude of childhood BL/SVI in Sumba and Yogyakarta is high. Our study suggests that a large proportion of childhood BL/SVI in Indonesia is avoidable.