title: Cross-Sectional Survey on Newborn Screening in Wisconsin Amish and Mennonite Communities.
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.
authors.affiliation: 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.
authors.forename: Shelby
authors.initials: S
authors.lastname: Sieren
authors.affiliation: 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.
authors.forename: Meghan
authors.initials: M
authors.lastname: Grow
authors.affiliation: 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.
authors.forename: Matthew
authors.initials: M
authors.lastname: GoodSmith
authors.affiliation: Wisconsin State Laboratory of Hygiene, Madison, WI, USA.
authors.forename: Gretchen
authors.initials: G
authors.lastname: Spicer
authors.affiliation: La Farge Medical Clinic, La Farge, WI, USA.
authors.forename: James
authors.initials: J
authors.lastname: Deline
authors.affiliation: Department of Biostatistics and Medical Informatics, University of Wisconsin School of Medicine and Public Health, Madison, WI, USA.
authors.forename: Qianqian
authors.initials: Q
authors.lastname: Zhao
authors.affiliation: Department of Biostatistics and Medical Informatics, University of Wisconsin School of Medicine and Public Health, Madison, WI, USA.
authors.forename: Mary J
authors.initials: MJ
authors.lastname: Lindstrom
authors.affiliation: Waisman Center, University of Wisconsin Madison, Madison, WI, USA.
authors.forename: Anne Bradford
authors.initials: AB
authors.lastname: Harris
authors.affiliation: Wisconsin Department of Health Services, Madison, WI, USA.
authors.forename: Angela M
authors.initials: AM
authors.lastname: Rohan
authors.affiliation: 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. cmseroogy@wisc.edu.
authors.forename: Christine M
authors.initials: CM
authors.lastname: Seroogy
mesh_terms: D061365:Amish; D003430:Cross-Sectional Studies; D030342:Genetic Diseases, Inborn / Q000175:diagnosis*; D005820:Genetic Testing; D006801:Humans; D007231:Infant, Newborn; D011315:Preventive Medicine; D011795:Surveys and Questionnaires; D014922:Wisconsin
keywords: Amish; Genetic disorders; Mennonite; Newborn screening; Preventive health