RESUMO
This protocol presents a comprehensive proposal for the establishment of the Saudi Cerebral Palsy Register (SCPR), a crucial project for investigating and addressing the prevalence, etiology, and management of cerebral palsy (CP) in Saudi Arabia. The SCPR will not only provide a robust database for ongoing research and analysis but will also serve as a platform for investigating the causes of CP, implementing preventative strategies, and improving the quality of care and outcomes for people with CP and their families in Saudi Arabia. Detailed case definitions, inclusion/exclusion criteria, and data collection protocols are discussed to ensure the integrity and comparability of the data. The plan also outlines strategic funding, institutional and government endorsement, sustainability considerations, potential challenges and proposed solutions, and expected outcomes and impact. These include creating research and educational opportunities, fostering regional and international collaborations, and significantly contributing to CP prevention strategies. Overcoming anticipated obstacles, such as stigma, institutional policies, and collaborations, and securing both necessary funding and endorsements are highlighted as critical for the success of the SCPR. The project is not only aligned with promote prevention of health risks, a target of Vision 2030 in Saudi Arabia, but is also expected to have a substantial impact on the health and quality of life of people with CP and their families in Saudi Arabia, serving as inspiration for similar efforts worldwide.
RESUMO
BACKGROUND: Studies on cerebral palsy among children and adolescents in Arabic-speaking countries are scarce. In this systematic review, we aimed to describe the epidemiology of cerebral palsy among children and adolescents in Arabic-speaking countries in terms of prevalence, risk factors, motor types, and rehabilitation. METHODS: Six key bibliographic databases were searched for relevant literature published to 17 July 2021. Titles and abstracts were screened for potential inclusion and two independent reviewers screened the full texts of potential articles following pre-defined inclusion/exclusion criteria. The included studies were evaluated independently by three reviewers. The risk of bias was assessed, and data were extracted and analysed. RESULTS: A total of 32 studies from 7 countries met our inclusion criteria. The prevalence of cerebral palsy in Arabic-speaking countries was 1.8/1000 live births (95% CI: 1.2-2.5). Spastic cerebral palsy was the most common motor type, representing 59.8% (95% CI: 46.2-72.7) of pooled estimates. This included children with spastic quadriplegia, diplegia, and hemiplegia; 25.1% (95% CI: 18.2-32.8), 16.2% (95% CI: 11.4-23.3), and 10.4% (95% CI: 7.3-13.8), respectively. Consanguinity was high and represented 37.7% (95% CI: 29.3-46.6). Only one included study reported the types of rehabilitation received (e.g., physiotherapy and assistance devices). CONCLUSIONS: This paper provides a summary of the epidemiology of cerebral palsy in Arabic-speaking countries and highlights areas for future research. There is still a substantial knowledge gap on the epidemiology of cerebral palsy in these regions. Countries in the Arab region should follow examples of countries that have successfully established cerebral palsy registries to generate evidence on epidemiology of cerebral palsy and opportunities for prevention.
RESUMO
BACKGROUND: We aimed to estimate the burden and underlying risk factors of malnutrition among children and adolescents with cerebral palsy in Arabic-speaking countries. METHODS: OVID Medline, OVID Embase, CINAHL via EBSCO, Cochrane Library, and SCOPUS databases were searched up to 3 July 2021. Publications were reviewed to identify relevant papers following pre-defined inclusion/exclusion criteria. Two reviewers independently assessed the studies for inclusion. Data extraction was independently completed by two reviewers. Descriptive and pooled analysis has been reported. RESULTS: From a total of 79 records screened, nine full-text articles were assessed for eligibility, of which seven studies met the inclusion criteria. Study characteristics, anthropometric measurements used, and nutritional outcome reported varied between the studies. The included studies contained data of total 400 participants aged 1-18 years. Overall, (mean: 71.46%, 95% confidence interval: 55.52-85.04) of children with cerebral palsy had at least one form of malnutrition. Severe gross motor function limitation, feeding difficulties, cognitive impairment and inadequate energy intake were the commonly reported underlying risk factors for malnutrition among children with cerebral palsy. CONCLUSIONS: The burden of malnutrition is high among children with cerebral palsy in Arabic-speaking countries. More research is needed for better understanding of this public health issue in these countries.
