Parental Attitudes, Beliefs, and Perceptions about Genetic Testing for FAP and Colorectal Cancer Surveillance in Minors
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ORIGINAL RESEARCH
Parental Attitudes, Beliefs, and Perceptions about Genetic Testing for FAP and Colorectal Cancer Surveillance in Minors Fallon R. Levine & James E. Coxworth & David A. Stevenson & Thérèse Tuohy & Randall W. Burt & Anita Y. Kinney
Received: 7 August 2009 / Accepted: 9 February 2010 / Published online: 2 March 2010 # National Society of Genetic Counselors, Inc. 2010
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
F. R. Levine : D. A. Stevenson Division of Medical Genetics, Department of Pediatrics, University of Utah, Salt Lake City, UT, USA J. E. Coxworth : T. Tuohy : R. W. Burt : A. Y. Kinney Huntsman Cancer Institute, University of Utah, Salt Lake City, UT, USA J. E. Coxworth Department of Anthropology, University of Utah, Salt Lake City, UT, USA R. W. Burt Division of Gastroenterology, Department of Internal Medicine, School of Medicine, University of Utah, Salt Lake City, UT, USA R. W. Burt : A. Y. Kinney Division of Clinical Epidemiology, Department of Internal Medicine, School of Medicine, University of Utah, Salt Lake City, UT, USA F. R. Levine (*) University of Alabama at Birmingham, 1530 3rd Avenue South, Kaul 202A, Birmingham, AL 35294, USA e-mail: [email protected]
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). Keywords FAP . Children . Parental attitudes . Endoscopic surveillance . Genetic testing . APC mutation
Introduction Familial adenomatous polyposis (FAP), the second most common hereditary colorectal cancer syndrome, is one of the few cancer susceptibility conditions that confers an almost 100% lifetime risk of developing cancer unless surgical intervention is performed. Reported incidence rates vary from approximately 1:8,000 to 1:13,500 (Bisgaard et al. 1994; Fearnhead et al. 2001; Gryfe 2006). It is an autosomal dominant condition most often caused by a mutation in the adenomatous polyposis coli (APC) gene located on chromosome 5q21 (Kinzler et al. 1991; Nishisho et al. 1991). Genetic testing for APC mutations is clinically
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