Faculty of Medicine, University of Colombo, Colombo, Sri Lanka.
Post graduate Institute of Medical Education and Research, Chandigarh, India.
Epilepsia Open. 2021 Dec;6(4):736-747. doi: 10.1002/epi4.12548. Epub 2021 Oct 25.
Etiological classification of infantile spasms syndrome (ISS) is important, considering the influence on prognosis based on the presence or absence of a known etiology. This study was performed to describe the limitations and difficulties experienced within the South Asian region when classifying the etiology of ISS according to the current recommendation.
Data on healthcare indices and facilities related to management of ISS for the nine countries in the South Asian region were gathered by the South Asian West Syndrome Research Group. A Google survey was performed among three hundred and thirty pediatric neurologists in the region. The capacity within each country for investigating etiology of ISS according to current described benchmarks was evaluated. The difficulties experienced in this regard and the potential solutions were investigated.
One hundred and sixty pediatric neurologists (response rate 48%) from Bangladesh (19/25), India (94/255), Myanmar (11/11), Nepal (6/8), Pakistan (19/25), and from Sri Lanka (7/8) responded. Three countries had no pediatric neurology services. Fifty-six percent attempted to classify ISS etiology according to classification outlined by International League Against Epilepsy in 2017. The facilities to perform metabolic, genetic, and immunological investigations were very limited. Lack of funding for investigations and poor laboratory support were the two most frequent barriers encountered. Sixty percent indicated that a separate classification is suitable for low-income setting; 78% suggested inclusion of separate category as "incompletely investigated" as an alternative solution to mitigate the barrier of achieving a better understanding of the etiological subtypes seen more frequently in this region.
The resources in South Asian region are limited to meet the recommendations for investigating etiology of ISS. Including the etiological subcategory "incompletely investigated" is proposed as an alternative to understand the true proportions of children in this region, with a definite known etiology and those with an unknown etiology.
婴儿痉挛综合征（ISS）的病因分类很重要，因为根据是否存在已知病因，这会影响预后。本研究旨在描述南亚地区按照现行推荐标准对 ISS 病因进行分类时所遇到的局限性和困难。
南亚 West 综合征研究小组收集了南亚九个国家与 ISS 管理相关的医疗保健指标和设施数据。在该地区对 330 名儿科神经科医生进行了谷歌调查。评估了每个国家按照现行描述的基准调查 ISS 病因的能力。调查了在这方面遇到的困难和潜在的解决方案。
来自孟加拉国（19/25）、印度（94/255）、缅甸（11/11）、尼泊尔（6/8）、巴基斯坦（19/25）和斯里兰卡（7/8）的 160 名儿科神经科医生（应答率为 48%）做出了回应。三个国家没有儿科神经科服务。56%的人试图根据 2017 年国际抗癫痫联盟分类来分类 ISS 病因。进行代谢、遗传和免疫研究的设施非常有限。缺乏调查资金和实验室支持不佳是遇到的两个最常见的障碍。60%的人表示，单独分类适合低收入环境；78%的人建议将“未充分调查”作为替代方案列入单独类别，以减轻对本地区更常见的病因亚型更好地了解的障碍。
南亚地区的资源有限，无法满足调查 ISS 病因的建议。包括病因亚类“未充分调查”被提议作为一种替代方案，以了解本地区具有明确已知病因和未知病因的儿童的真实比例。
