Abstract
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.
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Abbreviations
- NBS:
-
Newborn screening
- REDCap:
-
Research electronic data capture
- Amish:
-
Old Order Amish
- Mennonite:
-
Old Order Mennonite
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Acknowledgments
The authors thank Cherie Schommer and Tracy Henning for administrative assistance. The authors thank Dr. Laura Hogan for editorial assistance. The authors thank Rebecca Evans for her generosity in sharing the community survey from the Community Health Clinic, Topeka IN. The authors are grateful to the Old Order Amish and Mennonite advisory board members for their valuable input in development of our survey and assistance with survey distribution. Lastly, a special thank you to the Old Order Amish and Mennonite families for participating in our survey.
Funding Source
This study was funded by a Wisconsin Partnership Program Opportunity Grant (CMS), Genetic Alliance Impact Award (ABH), and the Clinical and Translational Science Award (CTSA) program at the University of Wisconsin (NIH/NCATS, UL1TR000427).
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Sieren, S., Grow, M., GoodSmith, M. et al. Cross-Sectional Survey on Newborn Screening in Wisconsin Amish and Mennonite Communities. J Community Health 41, 282–288 (2016). https://doi.org/10.1007/s10900-015-0094-1
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DOI: https://doi.org/10.1007/s10900-015-0094-1