Population-based surveillance of children with cerebral palsy enables early diagnosis and intervention

The 2019 Global Burden of Disease Study suggests that there are an estimated 50 million people with cerebral palsy (CP) globally.1 The burden of CP is substantially higher in low- and middle-income countries (LMICs) compared with high-income countries (HICs).2 Moreover, an overrepresentation of severe functional impairments is observed among children with CP in LMICs, probably due to delayed diagnosis and lack of access to early intervention.2 The limited service availability and shortage of rehabilitation service providers in LMICs is a major challenge.

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 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

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 rehabilitation Malnutrition 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