{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,1]],"date-time":"2026-10-01T08:50:43Z","timestamp":1790844643891,"version":"4.1.0"},"reference-count":32,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2024,1,10]],"date-time":"2024-01-10T00:00:00Z","timestamp":1704844800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100020365","name":"Centers for Disease Control and Prevention Foundation","doi-asserted-by":"publisher","award":["MSN228722"],"award-info":[{"award-number":["MSN228722"]}],"id":[{"id":"10.13039\/100020365","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Journal of Genetic Counseling"],"published-print":{"date-parts":[[2024,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Spinal muscular atrophy (SMA) has been reported in both Amish and Mennonite (Plain) communities, and a higher incidence has been observed in certain Mennonite communities compared to the general population. There are several therapies for SMA, but all are most effective in pre\u2010symptomatic newborns. To identify couples from the Wisconsin Plain community who are most likely to have a child with SMA, carrier screening is offered via mailed kits with at\u2010home specimen collection. Our survey data about Plain families' perspectives on genetic testing suggest educational materials are needed for individuals providing informed consent with at\u2010home specimen collection. We therefore developed a Plain population\u2010specific educational trifold brochure about SMA carrier screening by incorporating existing medical education strategies and feedback from Plain community members and their health care providers. Along with the brochure, surveys were included in the kits to assess baseline knowledge about SMA carrier screening (\u201cpre\u2010education\u201d) as well as improvement in knowledge after reviewing the brochure and cultural appropriateness of the brochure (\u201cpost\u2010education\u201d). Fifty\u2010five testing kits were distributed, and 26 survey pairs (pre\u2010 and post\u2010education) were returned and analyzed (response rate 47%). Respondents had high baseline knowledge with an average of 5 of 7 questions (71%) answered correctly on the pre\u2010education survey. Knowledge improved after reviewing the brochure as the average score increased to 6.5 of 7 questions (93%) answered correctly. Questions about risks of having an affected child after positive or negative carrier screening showed the most improvement from the pre\u2010education to post\u2010education surveys. Most respondents indicated the brochure was helpful, was easy to understand, and contained the right amount of information. Overall, incorporating elements of existing medical education strategies with feedback from the target population and stakeholders about appropriate language seems to be an effective method for creating beneficial, culturally responsive educational materials for the Plain population.<\/jats:p>","DOI":"10.1002\/jgc4.1866","type":"journal-article","created":{"date-parts":[[2024,1,10]],"date-time":"2024-01-10T14:39:56Z","timestamp":1704897596000},"page":"1285-1296","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Development and assessment of educational materials for spinal muscular atrophy carrier screening in the Plain community"],"prefix":"10.1002","volume":"33","author":[{"ORCID":"https:\/\/orcid.org\/0009-0009-7059-5189","authenticated-orcid":false,"given":"Carly","family":"Eichten","sequence":"first","affiliation":[{"name":"University of Wisconsin\u2010Madison School of Medicine and Public Health  Madison Wisconsin USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6610-285X","authenticated-orcid":false,"given":"Ashley","family":"Kuhl","sequence":"additional","affiliation":[{"name":"Department of Pediatrics University of Wisconsin School of Medicine and Public Health  Madison Wisconsin USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8707-1834","authenticated-orcid":false,"given":"Mei","family":"Baker","sequence":"additional","affiliation":[{"name":"Department of Pediatrics University of Wisconsin School of Medicine and Public Health  Madison Wisconsin USA"},{"name":"Newborn Screening Laboratory, Wisconsin State Laboratory of Hygiene University of Wisconsin School of Medicine and Public Health  Madison Wisconsin USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7720-2490","authenticated-orcid":false,"given":"Jennifer M.","family":"Kwon","sequence":"additional","affiliation":[{"name":"Department of Neurology University of Wisconsin School of Medicine and Public Health  Madison Wisconsin USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0532-3701","authenticated-orcid":false,"given":"Christine M.","family":"Seroogy","sequence":"additional","affiliation":[{"name":"Department of Pediatrics University of Wisconsin School of Medicine and Public Health  Madison Wisconsin USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katie B.","family":"Williams","sequence":"additional","affiliation":[{"name":"Department of Pediatrics University of Wisconsin School of Medicine and Public Health  Madison Wisconsin USA"},{"name":"Center for Special Children La Farge Medical Clinic \u2013 Vernon Memorial Healthcare  La Farge Wisconsin USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2024,1,10]]},"reference":[{"key":"e_1_2_12_2_1","doi-asserted-by":"publisher","DOI":"10.7860\/JCDR\/2017\/28197.9946"},{"key":"e_1_2_12_3_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMoa2009965"},{"key":"e_1_2_12_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/0277\u20109536(93)90017\u2010x"},{"key":"e_1_2_12_5_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0202104"},{"key":"e_1_2_12_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jmoldx.2019.03.004"},{"key":"e_1_2_12_7_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.94.15_supplement.1828"},{"key":"e_1_2_12_8_1","volume-title":"Effective patient education: A guide to increased compliance","author":"Falvo D. 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