Epidemiology of cerebral palsy among children in the remote Gorkha district of Nepal: findings from the Nepal cerebral palsy register.

PURPOSE: To describe the epidemiology of cerebral palsy (CP) among children in Gorkha, Nepal. METHODS: We established the first population-based register of children with CP aged <18 y in Gorkha, Nepal (i.e., Nepal CP Register). Children with suspected CP underwent detailed neurodevelopmental assessment by a multidisciplinary assessment team. Socio-demographic, etiology, motor severity, rehabilitation, and educational status were documented. RESULTS: Between January and October 2018, 182 children with confirmed CP were registered (mean (standard deviation (SD)) age: 10 years 1 months (4 years 10 months), 37.4% females). The majority (88.3%) had CP acquired pre- or perinatally. Mean (SD) age of CP diagnosis was four years five months. Mothers who did not receive any formal schooling had 4.5, 3.1, and 6.3 times higher odds of having inadequate antenatal care, homebirth, and unskilled birth attendants, respectively, when adjusted for other factors. Most children had spastic CP (77.5%) and Gross Motor Function Classification System level III-V (54.9%). Overall, 45.8% had never received rehabilitation services, 58.0% of school-aged children were not attending schools. The median age of receiving rehabilitation services was three years zero months. CONCLUSIONS: The delayed diagnosis and clinical severity indicate the overall poor health status of children with CP in Nepal which could be improved by ensuring early diagnosis and intervention. Implications for rehabilitationThe first population-based cerebral palsy register in Nepal suggests diagnosis of CP is considerably delayed among children.The high burden of severe motor impairment and poor communication skill with limited access to timely rehabilitation among children with CP in Nepal is concerning.Capacity development of community-based health workers and mothers of children with CP could help implementing community-based programs for prevention and early diagnosis of CP, and to promote early intervention for children with CP in remote Gorkha, Nepal.

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.

Nutritional Status of Children with Cerebral Palsy in Gorkha, Nepal: Findings from the Nepal Cerebral Palsy Register.

BACKGROUND: The study aimed to define the burden and underlying risk factors of malnutrition among children with cerebral palsy (CP) in Gorkha district, Nepal. METHODS: The first population-based register of children with CP in Gorkha, Nepal (i.e., Nepal CP Register-NCPR) was established in 2018. Children aged <18 years with confirmed CP were registered following standard protocol. Nutritional status was determined based on anthropometric measurements (height/length, weight, mid-upper-arm-circumference) following WHO guidelines. Descriptive analyses and adjusted logistic regression were completed. RESULTS: Between June-October 2018, 182 children with CP were registered into the NCPR (mean (SD) age at assessment: 10.3 (5.0) years, 37.4% female). Overall, 51.7%, 64.1%, and 29.3% children were underweight, stunted, and thin, respectively. Furthermore, 14.3% of children with CP aged <5 years had severe wasting. Underweight and stunting were significantly higher among children with spastic CP (p = 0.02, p < 0.001) and/or Gross Motor Function Classification System (GMFCS) level (III-V) (p = 0.01, p < 0.001) and/or who were not enrolled in school (p = 0.01, p < 0.001). In adjusted analysis, GMFCS level III-V and non-attendance to school significantly increased the odds of stunting by 8.2 (95% CI 1.6, 40.8) and 4.0 (95% CI 1.2, 13.2) times, respectively. CONCLUSIONS: the high rate of different forms of undernutrition among children with CP in Gorkha, Nepal is concerning. Need-based intervention should be taken as priority to improve their nutritional outcome.

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.