Kancherla Vijaya, Walani Salimah R, Weakland Aliki P, Bauwens Lieven, Oakley Godfrey P, Warf Benjamin C
Center for Spina Bifida Prevention, Department of Epidemiology, Emory University Rollins School of Public Health, Atlanta, GA, USA.
March of Dimes Foundation, White Plains, NY, USA.
Prev Med. 2017 Jun;99:13-20. doi: 10.1016/j.ypmed.2017.01.022. Epub 2017 Feb 9.
Spina bifida is a serious and largely preventable neural tube birth defect and an important cause of mortality and lifelong disability. The People and Organizations United for Spina Bifida and Hydrocephalus (PUSH!) Global Alliance was formed in 2014 to provide a common platform for various organizations worldwide to raise the visibility of spina bifida and hydrocephalus. In its formative phase, the alliance recognized that in order to accelerate surveillance, prevention, and care for these conditions, there was a need to provide an evidence-based assessment of how nations are performing in specific areas. In this paper, we describe the impetus for, and the process of, developing country-level scorecards for spina bifida surveillance, prevention and care. The PUSH! Executive Committee formulated a comprehensive list of six actionable indicators measuring availability of published studies on population-based folate studies; surveillance of prevalence and mortality; prevention-based policies; access to care; and quality of life associated with spina bifida. Rubrics were developed to score each country on the aforementioned indicators. Country scores were pooled across each indicator and the composite scores ranged between zero and three if there was a need for improvement, four and five if they were in good standing, or six for an excellent status. The scorecard included country-specific recommendations assimilated from the literature and published guidelines to aid policy makers in accelerating surveillance and prevention, and improving the care and quality of life indicators. For comparison, country-level scorecards were grouped by WHO-regions. Score cards were made available publicly through the website "www.pu-sh.org".
脊柱裂是一种严重且在很大程度上可预防的神经管出生缺陷，是导致死亡和终身残疾的重要原因。脊柱裂和脑积水全球联盟（PUSH!）于2014年成立，旨在为全球各组织提供一个共同平台，以提高脊柱裂和脑积水的关注度。在其形成阶段，该联盟认识到，为了加快对这些病症的监测、预防和护理，有必要对各国在特定领域的表现进行基于证据的评估。在本文中，我们描述了制定脊柱裂监测、预防和护理国家层面记分卡的动机和过程。PUSH!执行委员会制定了一份包含六个可操作指标的综合清单，用于衡量基于人群的叶酸研究的已发表研究的可获得性；患病率和死亡率监测；基于预防的政策；获得护理的机会；以及与脊柱裂相关的生活质量。制定了评分标准，以对每个国家在上述指标上进行评分。每个指标的国家得分进行汇总，如果需要改进，综合得分在零到三分之间；如果情况良好，得分在四分和五分之间；如果处于优秀状态，则得分为六分。记分卡包括从文献和已发表指南中收集的针对特定国家的建议，以帮助政策制定者加快监测和预防，并改善护理和生活质量指标。为了进行比较，国家层面的记分卡按世界卫生组织区域进行分组。记分卡通过“www.pu-sh.org”网站公开提供。
