Health knowledge of women with a fragile X premutation: Improving understanding with targeted educational material.

ABSTRACT: 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 fac

SUBMITTER: Smolich L 

PROVIDER: S-EPMC7390709 | biostudies-literature | 2020 Dec

REPOSITORIES: biostudies-literature