Knowledge, Attitudes, and Perceptions of Epilepsy in Asia: Toward a Uniform Study Protocol

Abstract

Summary: Purpose: Knowledge, attitudes, and perceptions of epilepsy (KAPE) among the public play a major role in determining the extent to which people with epilepsy can be integrated into their society. KAPE Surveys in Asia: Surveys conducted among Chinese in China, Taiwan, Malaysia, Singapore, and Hong Kong demonstrated similarities as well as differences in certain aspects of KAPE. These suggest that KAPE might not be uniform among other racial groups in the same or different regions of Asia. For KAPE to have usefulness to a country or community, it has to be location specific. Toward a Uniform Study Protocol: There are several advantages of using a uniform study protocol. Collection of KAPE data could be faster for any country or community that chooses to use any existing study protocol. Intraregional, interregional, intercontinental, interethnic, intercommunity, and longitudinal comparison within any subgroup could be carried out. Sharing of common information would enhance the regional effort in improving the quality of life of people affected by epilepsy. However, survey methods need not be uniform. Regional adaptation and flexibility of a unified protocol should be encouraged. After the study, concerted local and regional efforts in epilepsy education must be carried out systematically for the general public as well as for strategic groups. Conclusions: Determination of the KAPE in different parts of Asia would help to define the magnitude of and be the first step toward alleviating social discrimination against people with epilepsy in Asia.

Knowledge Attitudes and Practice toward Epilepsy among Adults in BaVi, Vietnam: First Report from the Population‐Based EPIBAVI Study

“…Such differences are often considered to reflect national and cultural attitudes, but it cannot be excluded that cultural differences in willingness to disclose what might be considered a politically incorrect opinion could contribute. However, other factors than nationality of the screened population may be important (Lim and Pan, 2005). These surveys span some 25 years, and attitudes in a region may change over time.…”

“…These surveys span some 25 years, and attitudes in a region may change over time. Knowledge, attitudes, and perceptions of epilepsy are also likely to vary within a country depending on, e.g., community, cultural or ethnic background, age, and educational level (Lim and Pan, 2005). It is therefore essential that the population at study is defined and well described.…”

A five-year follow‐up study of the general public awareness and perception of epilepsy in Croatia

“…Significantly fewer participants (− 4.9%) [X 2 (2) = 25.012, P b 0.001] stated that they heard or read about epilepsy in 2009 than in 2004, when middle-aged participants (36)(37)(38)(39)(40)(41)(42)(43)(44)(45)(46)(47)(48)(49)(50)(51)(52)(53)(54)(55), those better educated, those from least (L&B) and most (ZGB&V) developed regions and urban citizens were significantly more likely to select this answer (data not shown) [14].…”

“…An already stated impression comes to mind that a question format is an important factor that influences the final result and leads to significant nominal difference in percentages that are impossible to quantify. Evidently, future studies would benefit greatly from standardized [16,42] and culturally sensitive [42][43][44][45] questionnaires that would avoid predictable limitations of open questions to the largest extent possible. It is important to emphasize thatconsidering that only some epilepsies have known hereditary etiology [46], and considering that the public could equate "heredity" with "incurability", and thus form (more) negative attitudes toward the disease and those affected -this would have to be an important part of a public education campaign based on social marketing.…”

Public knowledge and attitudes toward epilepsy in Kuwait

“…Studies to determine the public awareness of, understanding of, and attitudes toward epilepsy is a necessary first step in eliminating social discrimination against epileptic patients (Lim & Pan, 2005). Surveys have been performed in several countries with different cultural backgrounds.…”