Aim To examine the prevalence, clinical characteristics, and risk factors of cerebral palsy (CP) in children in Bangladesh. Method The Bangladesh CP Register is an ongoing population‐based surveillance database of children with CP from a geographically defined area in Bangladesh. Cases were defined based on Surveillance of CP in Europe and Australian CP Register criteria after clinical assessments and identification by the key informant's method. Results In total, 726 children with CP were identified between January 2015 and December 2016. Mean age was 7 years 7 months (standard deviation [SD] 4y 6mo; range: 4.8mo–18y; median 7y 1.2mo; 61.8% male, 38.2% female). Mean age at CP diagnosis was 5 years 2 months (SD 3.8). Observed prevalence was 3.4 per 1000 children (95% confidence interval [CI]: 3.2–3.7), resulting in an estimated 233 514 children (95% CI: 219 778–254 118) with CP in Bangladesh. The majority (79.6%) had spastic CP. Altogether, 79.6% of the children with CP had at least one associated impairment (speech 67.6%, intellectual 39.0%, epilepsy 23.7%, visual 10.2%, and hearing 10.2%). In total, 78.2% never received rehabilitation. Interpretation In Bangladesh, the burden of CP is high, and diagnosis is substantially delayed, limiting opportunities for early intervention. There is a lack of available services and the majority of the children had preventable risk factors. What this paper adds Prevalence of cerebral palsy (CP) is 3.4 per 1000 children in rural Bangladesh. There are an estimated 233 514 children with CP in Bangladesh. The majority have potentially preventable risk factors. Diagnosis of CP is delayed, limiting opportunities for early intervention. There is a lack of available services for children with CP in rural Bangladesh.
AIM Determining inclusion/exclusion criteria for cerebral palsy (CP) surveillance is challenging. The aims of this paper were to (1) define inclusion/exclusion criteria that have been adopted uniformly by surveillance programmes and identify where consensus is still elusive, and (2) provide an updated list of the consensus concerning CP inclusion/exclusion when a syndrome/disorder is diagnosed.METHOD Data were drawn from an international survey of CP registers, the New South Wales CP Register (1993)(1994)(1995)(1996)(1997)(1998)(1999)(2000)(2001)(2002)(2003), the Western Australian CP Register (1975Register ( -2008, and the Surveillance of CP in Europe (SCPE; 1976-1998). An expert panel used a consensus building technique, which utilized the SCPE 'decision tree' and the original 'What constitutes cerebral palsy?' paper as frameworks.RESULTS CP surveillance programmes agree on key clinical criteria pertaining to the type, severity, and origin of motor disorder in CP. Further work is warranted to reach agreement for (1) minimum age of survival and maximum age of postneonatal brain injury, and (2) metabolic disorders with highly variable clinical courses/responses to treatment. One hundred and ninety-seven syndromes/disorders were reviewed and advice on their inclusion/ exclusion is provided. INTERPRETATIONWhat constitutes CP will continue to evolve as diagnostics improve.Surveillance programmes throughout the world are committed to addressing their differences regarding inclusion/exclusion criteria for the umbrella term CP.Advances and changes in diagnostic modalities and medical technology since our 1998 publication 'What constitutes cerebral palsy?' 1 have led to requests to revise the paper. Since 1998 we have seen an increase in the number of CP surveillance programmes internationally and their desire for collaboration led to the first World CP Register Day in 2009.2 Inclusion/exclusion criteria in CP surveillance were key points discussed. It was acknowledged by participants that whilst each group must meet the specific needs of their own individual surveillance programme, it is advantageous to have consensus across programmes regarding core inclusion/exclusion criteria. Consensus in criteria provides opportunities to pool data across registers, increase power for research, monitor trends over time between and across regions, and to evaluate new population level interventions such as magnesium sulphate 3 and cooling. 4 Similarly, homogeneity of inclusion/exclusion criteria is advantageous for researchers using registers as a sampling frame for multicentre trials. This article seeks to (1) define inclusion/exclusion criteria that have been adopted uniformly by surveillance programmes and to illuminate areas where consensus about criteria could not be reached between surveillance programmes, and (2) provide an updated list of the consensus concerning the inclusion or exclusion of CP when a syndrome or disorder is diagnosed. the original 1998 paper 1 or identified in potential registrants of the New South Wales ...
Aim: To determine trends and current estimates in regional and global prevalence of cerebral palsy (CP).Method: A systematic analysis of data from participating CP registers/surveillance systems and population-based prevalence studies (from birth year 1995) was performed. Quality and risk of bias were assessed for both data sources. Analyses were conducted for pre-/perinatal, postnatal, neonatal, and overall CP. For each region, trends were statistically classified as increasing, decreasing, heterogeneous, or no change, and most recent prevalence estimates with 95% confidence intervals (CI) were calculated. Meta-analyses were conducted to determine current birth prevalence estimates (from birth year 2010).Results: Forty-one regions from 27 countries across five continents were represented. Pre-/perinatal birth prevalence declined significantly across Europe and Australia (11 out of 14 regions), with no change in postneonatal CP. From the limited but increasing data available from regions in low-and middle-income countries (LMICs), birth prevalence for pre-/perinatal CP was as high as 3.4 per 1000 (95% CI 3.0-3.9) live births. Following meta-analyses, birth prevalence for pre-/perinatal CP in regions from high-income countries (HICs) was 1.5 per 1000 (95% CI 1.4-1.6) live births, and 1.6 per 1000 (95% CI 1.5-1.7) live births when postneonatal CP was included.
BackgroundThe causes and pathogenesis of cerebral palsy (CP) are all poorly understood, particularly in low- and middle-income countries (LMIC). There are gaps in knowledge about CP in Bangladesh, especially in the spheres of epidemiological research, intervention and service utilization. In high-income countries CP registers have made substantial contributions to our understanding of CP. In this paper, we describe a pilot study protocol to develop, implement, and evaluate a CP population register in Bangladesh (i.e., Bangladesh Cerebral Palsy Register - BCPR) to facilitate studies on prevalence, severity, aetiology, associated impairments and risk factors for CP.Methods/DesignThe BCPR will utilise a modified version of the Australian Cerebral Palsy Register (ACPR) on a secured web-based platform hosted by the Cerebral Palsy Alliance Research Institute, Australia. A standard BCPR record form (i.e., data collection form) has been developed in consultation with local and international experts. Using this form, the BPCR will capture information about maternal health, birth history and the nature of disability in all children with CP aged <18 years. The pilot will be conducted in the Shahjadpur sub-district of Sirajgonj district in the northern part of Bangladesh. There are 296 villages in Shahjadpur, a total population of 561,076 (child population ~ 226,114), an estimated 70,998 households and 12,117 live births per annum. Children with CP will be identified by using the community based Key Informants Method (KIM). Data from the completed BPCR record together with details of assessment by a research physician will be entered into an online data repository.DiscussionOnce implemented, BCPR will be, to the best of our knowledge, the first formalised CP register from a LMIC. Establishment of the BCPR will enable estimates of prevalence; facilitate clinical surveillance and promote research to improve the care of individuals with CP in Bangladesh.
The burden of undernutrition is high among children with cerebral palsy in rural Bangladesh which is augmented by both poverty and clinical severity. Enhancing clinical nutritional services for children with cerebral palsy should be a public health priority in Bangladesh. Implications for Rehabilitation Population-based surveillance data on nutritional status of children with cerebral palsy in Bangladesh indicates substantially high burden of malnutrition among children with CP in rural Bangladesh. Children with severe form of cerebral palsy, for example, higher Gross Motor Function Classification System (GMFCS) level, tri/quadriplegic cerebral palsy presents the highest proportion of severe malnutrition; hence, these vulnerable groups should be focused in designing nutrition intervention and rehabilitation programs. Disability inclusive and focused nutrition intervention programme need to be kept as priority in national nutrition policies and nutrition action plans specially in low- and middle-income countries. Community-based management of malnutrition has the potential to overcome this poor nutritional scenario of children with disability (i.e., cerebral palsy). The global leaders such as World Health Organization, national and international organizations should take this in account and conduct further research to develop nutritional guidelines for this vulnerable group of population.
High throughput sequencing is discovering many likely causative genetic variants in individuals with cerebral palsy. Some investigators have suggested that this changes the clinical diagnosis of cerebral palsy and that these individuals should be removed from this diagnostic category. Cerebral palsy is a neurodevelopmental disorder diagnosed on clinical signs, not etiology. All
AIM To describe cerebral palsy (CP) surveillance programmes and identify similarities and differences in governance and funding, aims and scope, definition, inclusion/exclusion criteria, ascertainment and data collection, to enhance the potential for research collaboration. METHOD Representatives from 38 CP surveillance programmes were invited to participate in an online survey and submit their data collection forms. Descriptive statistics were used to summarize information submitted. RESULTS Twenty-seven surveillance programmes participated (25 functioning registers, two closed owing to lack of funding). Their aims spanned five domains: resource for CP research, surveillance, aetiology/prevention, service planning, and information provision (in descending order of frequency). Published definitions guided decision making for the definition of CP and case eligibility for most programmes. Consent, case identification, and data collection methods varied widely. Ten key data items were collected by all programmes and a further seven by at least 80% of programmes. All programmes reported an interest in research collaboration. INTERPRETATION Despite variability in methodologies, similarities exist across programmes in terms of their aims, definitions, and data collected. These findings will facilitate harmonization of data and collaborative research efforts, which are so necessary on account of the heterogeneity and relatively low prevalence of CP.
Early oral health preventive care is required for children with CP because dental caries is highly prevalent in these children.
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