Health knowledge of women with a fragile X premutation: Improving understanding with targeted educational material.
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‐associated primary ovarian insufficiency (FXPOI) and fragile X‐associated tremor/ataxia syndrome (FX...
| Publicado en: | Journal of Genetic Counseling Vol. 29; no. 6; pp. 983 - 992 |
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| Autores principales: | , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Wiley-Blackwell
Dec2020
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=147378987&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 147378987 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 10597700 41A jtl: Journal of Genetic Counseling issn: 10597700 maglogo: N pubinfo: dt: Dec2020 vid: 29 iid: 6 pid: 480 pub: Wiley-Blackwell place: Malden, Massachusetts artinfo: ui: 147378987 145840862 147378987 147378987 10.1002/jgc4.1222 147378987 ppf: 983 ppct: 9 formats: fmt: – @attributes: type: T – @attributes: type: P tig: atl: Health knowledge of women with a fragile X premutation: Improving understanding with targeted educational material. aug: au: Smolich, Liana Charen, Krista Sherman, Stephanie L. affil: Genetic Counseling Training Program, Emory University School of Medicine, Atlanta Georgia sug: subj: Health Knowledge Fragile X Syndrome Complications Teaching Materials Women's Health Communication Human Tremor Risk Factors Ataxia Risk Factors Ovarian Diseases Risk Factors Female Wilcoxon Signed Rank Test Pamphlets Health Literacy Female ab: 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‐associated primary ovarian insufficiency (FXPOI) and fragile X‐associated 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 (N = 142) completed an online pre‐test to assess their knowledge of premutation‐associated conditions, and 135 women who provided an address received a booklet titled Women's Health and the Fragile X Premutation. After 3 months, 51.1% completed the post‐test. 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‐ and post‐test scores. Scores were significantly increased after receipt of the booklet (p <.05, Wilcoxon signed rank test). Participants answered that the booklet was 'very helpful' (44.6%) or 'somewhat helpful' (38.5%). Twenty‐four 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. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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