{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,10,22]],"date-time":"2025-10-22T03:06:28Z","timestamp":1761102388931,"version":"3.40.5"},"reference-count":25,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2020,1,30]],"date-time":"2020-01-30T00:00:00Z","timestamp":1580342400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"name":"Eunice Kennedy Shriver National Institute of Child Health and Human Development","award":["NS091859"],"award-info":[{"award-number":["NS091859"]}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Journal of Genetic Counseling"],"published-print":{"date-parts":[[2020,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Women who carry a fragile X premutation are at risk for at least two major health conditions and for transmitting fragile X syndrome (FXS) to their children. The two health concerns include fragile X\u2010associated primary ovarian insufficiency (FXPOI) and fragile X\u2010associated tremor\/ataxia syndrome (FXTAS). The aim of this study was to evaluate whether written educational information about these conditions would increase knowledge and facilitate communication. Women with a premutation (<jats:italic>N<\/jats:italic>\u00a0=\u00a0142) completed an online pre\u2010test to assess their knowledge of premutation\u2010associated conditions, and 135 women who provided an address received a booklet titled <jats:italic>Women's Health and the Fragile X Premutation<\/jats:italic>. After 3\u00a0months, 51.1% completed the post\u2010test. Major gaps in knowledge were related to FXPOI and factors associated with repeat expansion. To determine whether the booklet helped to fill gaps in knowledge, we compared pre\u2010 and post\u2010test scores. Scores were significantly increased after receipt of the booklet (<jats:italic>p<\/jats:italic>\u00a0&lt;\u00a0.05, Wilcoxon signed rank test). Participants answered that the booklet was \u2018very helpful\u2019 (44.6%) or \u2018somewhat helpful\u2019 (38.5%). Twenty\u2010four participants (34.8%) reported using the booklet to explain concepts to family members. Although we found that the booklet provided women with needed information, we found that gaps in knowledge still exist.<\/jats:p>","DOI":"10.1002\/jgc4.1222","type":"journal-article","created":{"date-parts":[[2020,1,30]],"date-time":"2020-01-30T10:33:11Z","timestamp":1580380391000},"page":"983-991","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":8,"title":["Health knowledge of women with a fragile X premutation: Improving understanding with targeted educational material"],"prefix":"10.1002","volume":"29","author":[{"given":"Liana","family":"Smolich","sequence":"first","affiliation":[{"name":"Genetic Counseling Training Program Emory University School of Medicine Atlanta Georgia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Krista","family":"Charen","sequence":"additional","affiliation":[{"name":"Department of Human Genetics Emory University School of Medicine Atlanta Georgia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1094-0798","authenticated-orcid":false,"given":"Stephanie L.","family":"Sherman","sequence":"additional","affiliation":[{"name":"Department of Human Genetics Emory University School of Medicine Atlanta Georgia"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2020,1,30]]},"reference":[{"key":"e_1_2_8_2_1","doi-asserted-by":"publisher","DOI":"10.1017\/S1463423618000038"},{"key":"e_1_2_8_3_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.e1602"},{"key":"e_1_2_8_4_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.32060"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1525-1497.2004.40153.x"},{"issue":"3","key":"e_1_2_8_6_1","first-page":"387","article-title":"The role of literacy in health and health care","volume":"72","author":"Dewalt D. 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