Standards for epidemiologic studies and surveillance of epilepsy

CDC National Center for Chronic Disease Prevention and Health Promotion, Atlanta, Georgia, USA.
Epilepsia (Impact Factor: 4.57). 09/2011; 52 Suppl 7(s7):2-26. DOI: 10.1111/j.1528-1167.2011.03121.x
Source: PubMed


Worldwide, about 65 million people are estimated to have epilepsy. Epidemiologic studies are necessary to define the full public health burden of epilepsy; to set public health and health care priorities; to provide information needed for prevention, early detection, and treatment; to identify education and service needs; and to promote effective health care and support programs for people with epilepsy. However, different definitions and epidemiologic methods complicate the tasks of these studies and their interpretations and comparisons. The purpose of this document is to promote consistency in definitions and methods in an effort to enhance future population-based epidemiologic studies, facilitate comparison between populations, and encourage the collection of data useful for the promotion of public health. We discuss: (1) conceptual and operational definitions of epilepsy, (2) data resources and recommended data elements, and (3) methods and analyses appropriate for epidemiologic studies or the surveillance of epilepsy. Variations in these are considered, taking into account differing resource availability and needs among countries and differing purposes among studies.

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Available from: Charles Newton, Sep 14, 2014
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    • "In developed countries, the age-adjusted prevalence of epilepsy, operationally defined as two or more unprovoked seizures occurring at least 24 h apart [1], is 4–8 per 1000 population subjects [2] [3]. Epilepsy is a condition highly associated with stigma. "
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    ABSTRACT: We aimed to relate the percentages of encountered epilepsy-related stigma in people with epilepsy with quantitative indicators of the quality of health systems and quality of life by country in Europe. The epilepsy-related stigma percentages were obtained from the largest population-based study in people with epilepsy available. We correlated percentages of people with perceived stigma per European country with data on the country's overall health system performance, health expenditure per capita in international dollars, and the Economist Intelligence Unit's quality-of-life index. Wefound a nonsignificant trend towards negative correlation between the epilepsy-related stigma percentage and the overall health systemperformance (r=−0.16; p=0.57), the health expenditure per capita in international dollars (r = −0.24; p = 0.4), and the Economist Intelligence Unit's quality-of-life index (r = −0.33; p = 0.91). Living in a European country with a better health system performance and higher health expenditure per capita does not necessarily lead to a reduction in perceived epilepsy-related discrimination, unless the public health system invests on awareness programs to increase public knowledge and reduce stigma.
    Full-text · Article · Dec 2014 · Epilepsy & Behavior
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    • "Results were compared with a normative sample of Ugandan children of similar age (Bangirana et al., 2009); children scoring less than −2 SDs on any one of four areas assessed were considered to have moderate to severe CI, and those scoring less than −3 SDs were rated severe. A diagnosis of epilepsy was made based upon standard clinical criteria for the diagnosis of each major seizure type and epilepsy syndrome, including history and neurology examination findings (Meinardi et al., 2001; Thurman et al., 2011). Using standard clinical criteria, diagnoses of CP (Rosenbaum et al., 2007), speech and language impairment (De Lamo White and Jin, 2011, hearing impairment (Kieran and Fenton, 2007), and vision impairment (Adoh and Woodhouse, 1994; Hyvarinen, 2000) were recorded on project data collection forms. "
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    ABSTRACT: Neurodevelopmental disorders are recognized to be relatively common in developing countries but little data exist for planning effective prevention and intervention strategies. In particular, data on autism spectrum disorders are lacking. For application in Uganda, we developed a 23-question screener (23Q) that includes the Ten Questions screener and additional questions on autism spectrum disorder behaviors. We then conducted household screening of 1169 children, 2-9 years of age, followed by clinical assessment of children who screened positive and a sample of those who screened negative to evaluate the validity of the screener. We found that 320 children (27% of the total) screened positive and 68 children received a clinical diagnosis of one or more moderate to severe neurodevelopmental disorders (autism spectrum disorder; cerebral palsy; epilepsy; cognitive, speech and language, hearing, or vision impairment), including 8 children with autism spectrum disorders. Prevalence and validity of the screener were evaluated under different statistical assumptions. Sensitivity of the 23Q ranged from 0.55 to 0.80 and prevalence for ≥1 neurodevelopmental disorders from 7.7/100 children to 12.8/100 children depending on which assumptions were used. The combination of screening positive on both autism spectrum disorders and Ten Questions items was modestly successful in identifying a subgroup of children at especially high risk of autism spectrum disorders. We recommend that autism spectrum disorders and related behavioral disorders be included in studies of neurodevelopmental disorders in low-resource settings to obtain essential data for planning local and global public health responses.
    Full-text · Article · May 2014 · Autism
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    • "Epilepsy is a common and chronic neurological disorder which affects 60 million people worldwide (Ngugi et al., 2010; Thurman et al., 2011). Most people with epilepsy (PWE) live in low-and middle-income countries. "
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    ABSTRACT: Epilepsy is a common neurological disorder in Nigeria. Many individuals are affected in rural areas, although prevalence data is not available. In this study we aimed to establish the prevalence of epilepsy in a rural community in south-east Nigeria, a community suspected for having a high number of people living with epilepsy. We compared this with the prevalence in a nearby semi-urban community in north-central Nigeria. In both communities we identified potential causes of epilepsy and obtained information on the social beliefs regarding epilepsy. We used door-to-door surveys and focus group discussions. The epilepsy prevalence in the rural community was 20.8/1000 [95% confidence interval (CI): 15.7-27.4]. The prevalence in the semi-rural community was lower, namely 4.7/1000 [CI: 3.2-6.9]. The difference in prevalence was highly significant (χ(2)-test, p<0.0001). In both communities most people with epilepsy were in the age range of 7-24 years. Causes that might be contributory to the prevalence of epilepsy in both communities included poor obstetric practices, frequent febrile convulsions, head trauma, meningitis and neurocysticercosis. In both communities we found stigma of people with epilepsy. In conclusion, the epilepsy prevalence in the semi-urban community is similar to that in industrialized countries. In contrast, the rural community has a much higher prevalence. This may require the establishment of specific community-based epilepsy control programs. Community interventions should focus on treatment of acute epilepsy and on stigma reduction.
    Full-text · Article · Nov 2013 · Epilepsy research
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