Parental Attitudes, Beliefs, and Perceptions about Genetic Testing for FAP and Colorectal Cancer Surveillance in Minors
- 335 Downloads
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).
KeywordsFAP Children Parental attitudes Endoscopic surveillance Genetic testing APC mutation
This project was funded by a career development award (K07CA82121) and a University of Utah seed grant awarded to Dr. Kinney, as well as two National Cancer Institute grants awarded to Dr. Burt (R01-CA40641 and P01-CA73992) and a Cancer Center Support Grant (5P30CA042014). This project was also funded by the University of Utah Graduate Program in Genetic Counseling and the Huntsman Cancer Foundation. We appreciate the work of José Benuzillo for his assistance with the data analysis, and Susan Schulman for her assistance with manuscript preparation.
- American Society of Human Genetics Board of Directors, American College of Medical Genetics Board of Directors. (1995). Points to consider: ethical, legal, and psychosocial implications of genetic testing in children and adolescents. American Journal of Human Genetics, 57(5), 1233–1241.Google Scholar
- Borry, P., Stultiëens, L., Nys, H., & Dierickx, K. (2007). Attitudes towards predictive genetic testing in minors for familial breast cancer: a systematic review. Oncology Hematology, 64(3), 173–181.Google Scholar
- Burt, R. W., & Jasperson, K. W. (2008). APC- Associated Polyposis Conditions. GeneReviews, 1–31. Retrieved from https://doi.org/www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=fap.
- Codori, A. M., Petersen, G. M., Miglioretti, D. L., Larkin, E. K., Bushey, M. T., Young, C., et al. (1999). Attitudes toward colon cancer gene testing: factors predicting test uptake. Cancer Epidemiology Biomarkers and Prevention, 8(4 Pt2), 345–351.Google Scholar
- Duncan, R. E., Gillam, L., Savulescu, J., Williamson, R., Rogers, J. G., & Delatycki, M. B. (2008). “You’re one of us now”: young people describe their experiences of predictive genetic testing for Huntington disease (HD) and familial adenomatous polyposis (FAP). American Journal of Medical Genetics Part C, 148C(1), 47–55.CrossRefGoogle Scholar
- Krippendorff, K. (1980). Content analysis: an introduction to its methodology. Beverly Hills: Sage.Google Scholar
- Miles, M. B., & Huberman, A. M. (1994). An expanded sourcebook: qualitative data analysis (2nd ed.). Thousand Oaks: Sage.Google Scholar
- National Comprehensive Cancer Network Colorectal Screening Panel (2009). Hereditary Syndromes: Familial Adenomatous Polyposis Syndromes. NCCN Practice Guidelines in Oncology: Colorectal Cancer Screening, v.1.2009. Retrieved from https://doi.org/www.nccn.org/professionals/physician_gls/PDF/colorectal_screening.pdf.