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2
Economic burden of neural tube defects and impact of prevention with folic acid: a literature review.神经管缺陷的经济负担和叶酸预防的影响:文献综述。
Eur J Pediatr. 2011 Nov;170(11):1391-400. doi: 10.1007/s00431-011-1492-8. Epub 2011 May 19.
3
[Births prevalence of 27 selected congenital anomalies in 7 geographic regions of Argentina].[阿根廷7个地理区域中27种选定先天性异常的出生患病率]
Arch Argent Pediatr. 2010 Oct;108(5):409-17. doi: 10.1590/S0325-00752010000500006.
4
Folic acid flour fortification: impact on the frequencies of 52 congenital anomaly types in three South American countries.叶酸面粉强化:对三个南美国家 52 种先天畸形类型频率的影响。
Am J Med Genet A. 2010 Oct;152A(10):2444-58. doi: 10.1002/ajmg.a.33479.
5
Prenatal sonographic detection of birth defects in 18 hospitals from South America.18 家南美医院的产前超声出生缺陷检测。
J Ultrasound Med. 2010 Feb;29(2):203-12. doi: 10.7863/jum.2010.29.2.203.
6
[Comment on the bill modifying the Law on prevention of congenital defects in Argentina].[关于修改阿根廷先天性缺陷预防法法案的评论]
Rev Derecho Genoma Hum. 2009 Jan-Jun(30):155-68.
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[Analysis of infant mortality from congenital malformations in Argentina during the 2002-2006 period].[2002 - 2006年阿根廷先天性畸形导致的婴儿死亡率分析]
Arch Argent Pediatr. 2009 Jun;107(3):203-11. doi: 10.1590/S0325-00752009000300007.
8
[Impact of folic acid fortification on women's nutritional status and on the prevalence of neural tube defects].[叶酸强化对女性营养状况及神经管缺陷患病率的影响]
Arch Argent Pediatr. 2008 Dec;106(6):492-8. doi: 10.1590/S0325-00752008000600004.
9
[Folic acid for neural tube defects prevention: consumption and information in fertil-age women in Centro Cuyo Region].[预防神经管缺陷的叶酸:库约地区育龄妇女的摄入量及知晓情况]
Arch Argent Pediatr. 2008 Aug;106(4):295-301. doi: 10.1590/S0325-00752008000400004.
10
[A census of medical genetics services in Argentina].[阿根廷医学遗传学服务普查]
Rev Panam Salud Publica. 2006 Feb;19(2):104-11. doi: 10.1590/s1020-49892006000200005.

阿根廷用于神经管缺陷健康需求评估的工具包的使用情况。

The use of a Toolkit for health needs assessment on neural tube defects in Argentina.

作者信息

Groisman Boris, Liascovich Rosa, Barbero Pablo, Alberg Corinna, Moorthie Sowmiya, Nacul Luis, Sagoo Gurdeep S

机构信息

National Center of Medical Genetics, National Ministry of Health, City of Buenos Aires, Argentina,

出版信息

J Community Genet. 2013 Jan;4(1):77-86. doi: 10.1007/s12687-012-0120-2. Epub 2012 Oct 4.

DOI:10.1007/s12687-012-0120-2
PMID:23055101
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC3537973/
Abstract

Health needs assessment (HNA) is a commonly used process for those working in public health. The PHG Foundation has developed a Toolkit to provide users with a stepwise approach for undertaking a HNA on birth defects. We report the findings from using the Toolkit to examine needs in relation to policies and programs, services, and interventions for neural tube defects (NTDs) in Argentina. The trend over the last few decades is one of decline in infant mortality from nutritional and infectious causes, thus further increasing the relative importance of birth defects. The observed prevalence of NTDs is consistent with that reported internationally. Since 2002 folic acid fortification (FAF) has been mandatory by law, and different studies have shown at least a 50 % decrease in the birth prevalence of NTDs after FAF. In Argentina, there is inequity between the public and non-public health sectors. The birth prevalence of NTDs seems lower in the non-public sector, possibly as a result of better nutritional status of women, higher access to folic acid supplementation, and earlier prenatal diagnosis followed by termination of pregnancy (ToP) in non-public hospitals. Although illegal, ToP is believed to be widespread, with better access for people of higher socioeconomic status. Through the process of HNA, we identified several unmet needs regarding registration of cases, public and professional education, legislation, and organization of care pathways. In our experience, the Toolkit brought together people working on the same issue, and it engaged and motivated experts and stakeholders to work together to tackle the problem.

摘要

健康需求评估(HNA)是公共卫生领域工作人员常用的一种方法。PHG基金会开发了一套工具包,为用户提供了一种对出生缺陷进行HNA的逐步方法。我们报告了使用该工具包来研究阿根廷神经管缺陷(NTD)在政策与项目、服务及干预措施方面需求的结果。过去几十年的趋势是营养和感染性病因导致的婴儿死亡率下降,从而进一步增加了出生缺陷的相对重要性。观察到的NTD患病率与国际报告的一致。自2002年以来,叶酸强化(FAF)已被法律强制要求,不同研究表明FAF实施后NTD的出生患病率至少降低了50%。在阿根廷,公共卫生部门和非公共卫生部门之间存在不平等现象。NTD的出生患病率在非公共部门似乎较低,这可能是由于女性营养状况较好、叶酸补充剂获取途径更多,以及非公立医院更早进行产前诊断并随后终止妊娠(ToP)。尽管ToP是非法的,但据信其很普遍,社会经济地位较高的人更容易获得。通过HNA过程,我们确定了在病例登记、公众和专业教育、立法以及护理途径组织方面的一些未满足需求。根据我们的经验,该工具包将从事同一问题研究的人员聚集在一起,并促使专家和利益相关者共同努力解决问题。