Impact of familial adenomatous polyposis on young adults: Attitudes toward genetic testing,support, and information needs Andrews, Leslie en_US Mireskandari, Shab en_US Jesson, Jaime en_US Thewes, B en_US Solomon, Michael en_US Macrae, F en_US Meiser, Bettina en_US 2021-11-25T12:58:24Z 2021-11-25T12:58:24Z 2006 en_US
dc.description.abstract Purpose: The study assessed views concerning genetic testing and information and support needs among young adults aged 18 to 35 years with a diagnosis of or at risk of developing familial adenomatous polyposis. Methods: A total of 88 participants were recruited through Hereditary Bowel Cancer Registries and assessed using self-administered questionnaires. Results: The average age of participants was 28 years, and the average age at the time of their last genetic consultation was 23 years. Although 75% would consider prenatal genetic testing, only 21% would consider termination of an affected pregnancy. Sixty-one percent selected "at birth" or "early childhood" as the preferred age for genetic testing of offspring. Participants' highest areas of unmet support needs were with regard to anxiety about their children having familial adenomatous polyposis (39%) and fear of developing cancer (28%). Conclusion: The parental desire to test children before it is clinically indicated may be a source of distress and create conflict with genetic services. These findings demonstrate that familial adenomatous polyposis may significantly impact young adults, with many having unmet support needs. The length of time since the last genetic consultation and the young age at which these consultations took place suggest that clinics should consider a means of regular follow-up to address these unmet needs. en_US
dc.identifier.issn 1098-3600 en_US
dc.language English
dc.language.iso EN en_US
dc.rights CC BY-NC-ND 3.0 en_US
dc.rights.uri en_US
dc.source Legacy MARC en_US
dc.title Impact of familial adenomatous polyposis on young adults: Attitudes toward genetic testing,support, and information needs en_US
dc.type Journal Article en
dcterms.accessRights metadata only access
dspace.entity.type Publication en_US
unsw.identifier.doiPublisher en_US
unsw.relation.faculty Medicine & Health
unsw.relation.ispartofissue 11 en_US
unsw.relation.ispartofjournal Genetics in Medicine en_US
unsw.relation.ispartofpagefrompageto 697-703 en_US
unsw.relation.ispartofvolume 8 en_US
unsw.relation.originalPublicationAffiliation Andrews, Leslie en_US
unsw.relation.originalPublicationAffiliation Mireskandari, Shab en_US
unsw.relation.originalPublicationAffiliation Jesson, Jaime en_US
unsw.relation.originalPublicationAffiliation Thewes, B en_US
unsw.relation.originalPublicationAffiliation Solomon, Michael en_US
unsw.relation.originalPublicationAffiliation Macrae, F en_US
unsw.relation.originalPublicationAffiliation Meiser, Bettina, Prince of Wales Clinical School, Faculty of Medicine, UNSW en_US Clinical School Prince of Wales Hospital *
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