Impact of Familial Adenomatous Polyposis: An Emerging Adult Perspective

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dc.contributor.advisor Chan-Smutko, Gayun en_US
dc.contributor.author D'Orlando, Nina
dc.date.accessioned 2017-05-22T20:25:43Z
dc.date.available 2017-05-22T20:25:43Z
dc.date.issued 2017
dc.identifier.uri http://hdl.handle.net/10192/33894
dc.description.abstract Familial Adenomatous Polyposis (FAP) is a rare, highly penetrant, genetic cancer predisposition syndrome typically requiring prophylactic removal of the colon. This study is an early look at the specific impact of FAP in the dynamic period of life between the ages of 18 to 25 termed “emerging adulthood.” Participants recruited through the Hereditary Colon Cancer Foundation were asked to complete an online survey designed to collect both quantitative and qualitative data that focused on areas of life typically important to emerging adults: education, career planning, relationships, and family planning. Additionally, overall adjustment was assessed via the previously validated Psychological Adaptation Scale (PAS) and participants were asked about the time of diagnosis and experiences with genetic counseling. Participants (n=33) expressed varying degrees of impact across all domains, although the PAS revealed that on average participants were relatively well adjusted to their diagnosis. Specific challenges highlighted by participants included a lack of informed providers, difficulties due to missed school or work, struggles in relationships with friends and romantic partners, and a desire to avoid passing this condition on to children. These results suggest that a longitudinal care model of periodic follow-up with a multidisciplinary care team of genetics, gastroenterology, surgery, and mental health professionals may be beneficial for emerging adults with FAP. en_US
dc.description.sponsorship Brandeis University, Graduate School of Arts and Sciences en_US
dc.format.mimetype application/pdf en_US
dc.language English en_US
dc.language.iso eng en_US
dc.publisher Brandeis University en_US
dc.relation.ispartofseries Brandeis University Theses and Dissertations
dc.rights Copyright by Nina D'Orlando 2017 en_US
dc.subject Familial Adenomatous Polyposis en_US
dc.subject FAP en_US
dc.subject Genetic Counseling en_US
dc.subject Emerging Adult en_US
dc.subject Impact of FAP en_US
dc.title Impact of Familial Adenomatous Polyposis: An Emerging Adult Perspective en_US
dc.type Thesis en_US
dc.contributor.department Graduate Program in Genetic Counseling en_US
dc.degree.name MS en_US
dc.degree.level Masters en_US
dc.degree.discipline Genetic Counseling en_US
dc.degree.grantor Brandeis University, Graduate School of Arts and Sciences en_US


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