Cross-Sectional Survey on Newborn Screening in Wisconsin Amish and Mennonite Communities
Cross-Sectional Survey on Newborn Screening in Wisconsin Amish and Mennonite Communities
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DOI：
10.1007/s10900-015-0094-1
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发表时间：
2016-04-01
影响因子：
5.9
通讯作者：
Seroogy, Christine M.
中科院分区：
文献类型：
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作者：
Sieren, Shelby;Grow, Meghan;Seroogy, Christine M.
旧秩序阿米什人和门诺派教徒，或平原人口，是北美日益增长的少数民族，具有独特的卫生保健提供和获得挑战，加上遗传性疾病的频率更高。本研究的目的是确定新生儿筛查的使用和态度，从西部威斯康星州平原社区。一项横断面调查提供了代表2010名儿童的数据，总体答复率为25%。在有儿童的家庭（n = 297）中，新生儿筛查率为74%，其中40%的家庭对所有儿童进行了筛查。无法获得检测是未对所有儿童进行筛查的最常见原因，父母年龄与检测呈负相关。大多数受访者报告了一些或更多的筛查知识，认为筛查很重要，并在他们的社区获得筛查。与至少有一个孩子接受过筛查的家庭相比，有孩子从未接受过新生儿筛查的家庭（26%）在所有类别中报告的有利反应频率较低。与知识和对其重要性的考虑相比，新生儿筛查的差异在两组之间不太明显。此外，55%从未对任何孩子进行过筛查的家庭报告说，他们不太可能或不确定对未来的任何孩子进行筛查。重点是改善获得新生儿筛查的机会，同时建立方法来改变父母对新生儿筛查重要性的看法，这对增加这些平原社区的新生儿筛查是必要的。
Old Order Amish and Mennonites, or Plain populations, are a growing minority in North America with unique health care delivery and access challenges coupled with higher frequencies of genetic disorders. The objective of this study was to determine newborn screening use and attitudes from western Wisconsin Plain communities. A cross-sectional survey, with an overall response rate of 25 %, provided data representing 2010 children. In households with children (n = 297), the rate of newborn screening was 74 % and all children were screened in 40 % of these households. Lack of access to testing was the most common reason for not screening all children and parental age was inversely associated with testing. The majority of respondents reported some or more knowledge of screening, viewed screening as important, and had access to screening in their communities. Households with children who had never received newborn screening (26 %) reported lower frequencies of favorable responses in all categories compared to households that had at least one child screened. The difference in access to newborn screening was less marked between the groups compared to differences on knowledge and consideration of its importance. Moreover, 55 % of households who had never screened any of their children reported being unlikely or unsure of screening any future children. A focus on improving access to newborn screening alongside establishing approaches to change parental perceptions on the importance of newborn screening is necessary for increasing newborn screening in these Plain communities.