title: Parental attitudes, beliefs, and perceptions about genetic testing for FAP and colorectal cancer surveillance in minors.
abstract: Familial adenomatous polyposis (FAP) is the second most common hereditary colorectal cancer syndrome and confers a nearly 100% lifetime risk of developing colorectal cancer. Understanding factors that facilitate and inhibit genetic testing and cancer surveillance in children who are members of families affected by FAP will better equip clinicians to clarify misunderstandings and facilitate appropriate care. The aims of this study were to examine parental attitudes and beliefs regarding endoscopic surveillance and genetic testing in minors at risk for developing FAP. This cross-sectional study includes analyses of qualitative and quantitative interview data collected from parents of children with or at risk for FAP. This report includes data from 28 parents with a total of 51 biological children between 10-17 years of age. The parents had a clinical and/or genetic diagnosis of FAP. Most commonly reported facilitators included provider recommendation (surveillance) and personalized medical management (genetic testing). Most commonly reported barriers included lack of provider recommendation (surveillance) and cost (genetic testing).
authors.affiliation: Division of Medical Genetics, Department of Pediatrics, University of Utah, Salt Lake City, UT, USA. flevine@genetics.uab.edu
authors.forename: Fallon R
authors.initials: FR
authors.lastname: Levine
authors.forename: James E
authors.initials: JE
authors.lastname: Coxworth
authors.forename: David A
authors.initials: DA
authors.lastname: Stevenson
authors.forename: Thérèse
authors.initials: T
authors.lastname: Tuohy
authors.forename: Randall W
authors.initials: RW
authors.lastname: Burt
authors.forename: Anita Y
authors.initials: AY
authors.lastname: Kinney
mesh_terms: D011125:Adenomatous Polyposis Coli / Q000175:diagnosis / Q000235:genetics* / Q000517:prevention & control; D000293:Adolescent; D002648:Child; D003113:Colonoscopy / Q000523:psychology*; D015179:Colorectal Neoplasms / Q000175:diagnosis / Q000235:genetics* / Q000517:prevention & control; D003430:Cross-Sectional Studies; D004252:DNA Mutational Analysis; D005260:Female; D017491:Genes, APC; D020022:Genetic Predisposition to Disease / Q000235:genetics / Q000523:psychology; D005820:Genetic Testing / Q000523:psychology*; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D033242:Minors; D010290:Parents / Q000523:psychology*; D011159:Population Surveillance; D012042:Registries; D012812:Sigmoidoscopy / Q000523:psychology*; D014589:Utah