Sieren Shelby, Grow Meghan, GoodSmith Matthew, Spicer Gretchen, Deline James, Zhao Qianqian, Lindstrom Mary J, Harris Anne Bradford, Rohan Angela M, Seroogy Christine M
Division of Allergy, Immunology and Rheumatology, Department of Pediatrics, University of Wisconsin School of Medicine and Public Health, 1111 Highland Avenue, 4139 WIMR, Madison, WI, 53705-2275, USA.
Wisconsin State Laboratory of Hygiene, Madison, WI, USA.
J Community Health. 2016 Apr;41(2):282-8. doi: 10.1007/s10900-015-0094-1.
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.
旧秩序阿米什人和门诺派，即清教徒群体，在北美是一个不断壮大的少数群体，他们在医疗保健服务和就医方面面临独特挑战，同时遗传疾病的发病率较高。本研究的目的是确定威斯康星州西部清教徒社区新生儿筛查的使用情况和态度。一项横断面调查的总体回复率为25%，提供了代表2010名儿童的数据。在有孩子的家庭（n = 297）中，新生儿筛查率为74%，其中40%的家庭对所有孩子都进行了筛查。无法获得检测是未对所有孩子进行筛查的最常见原因，父母年龄与检测呈负相关。大多数受访者表示对筛查有一定或更多了解，认为筛查很重要，并且所在社区能够进行筛查。与至少有一个孩子接受过筛查的家庭相比，孩子从未接受过新生儿筛查的家庭（26%）在所有类别中的积极回应频率较低。与在知识和对其重要性的认识方面的差异相比，两组在获得新生儿筛查方面的差异不太明显。此外，从未对任何孩子进行过筛查的家庭中有55%表示不太可能或不确定是否会对未来的孩子进行筛查。为了在这些清教徒社区提高新生儿筛查率，有必要在改善新生儿筛查可及性的同时，制定改变父母对新生儿筛查重要性看法的方法。
