In order to promote ongoing quality improvement of not only the Penn State Cancer Genetics Program, but also other cancer risk assessment programs throughout the country, we developed, piloted and conducted a survey to explore patient expectations, experiences, and satisfaction with the cancer genetic counseling process. The comprehensive survey was mailed to 340 eligible patients, 156 (45.9%) of whom returned the completed survey within the allotted time. Responses to closed-ended questions were tallied and open-ended questions were content analyzed. Major findings show that: (1) Patients were seeking cancer-related information and support throughout the cancer risk assessment process and were interested in participating in available research studies; (2) The setting in which patients are seen for cancer risk assessment may pose potential emotional ramifications; (3) Misperceptions regarding insurance discrimination and lack of insurance coverage persist; (4) Patients view the genetic counselor as responsible for updating them about new discoveries. Specific recommendations for cancer genetics programs are included.
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REFERENCES
Baker, D. L., Eash, T., Schuette, J. L., & Uhlmann, W. R. (2002). Guidelines for writing letters to patients. J Genet Couns, 11(5), 399–418.
Bonadona, V., Saltel, P., Desseigne, F., Mignotte, H., Saurin, J.-C., Wang, Q., et al. (2002). Cancer patients who experienced diagnostic genetic testing for cancer susceptibility: Reactions and behavior after the disclosure of a positive test result. Cancer Epidemiol Biomarkers & Prev, 11, 97–104.
Collins, V., Halliday, J., Warren, R., & Williamson, R. (2000). Assessment of education and counseling offered by a familial colorectal cancer clinic. Clin Genet, 57, 48–55.
Freyer, G., Dazord, A., Schlumberger, M., Conte-Devolx, B., Ligneau, B., Trillet-Lenoir, V., et al. (1999). Psychosocial impact of genetic testing in familial medullary-thyroid carcinoma: A multicentric pilot-evaluation. Ann Oncol, 10(1), 87–95.
Geer, K. P., Ropka, M. E., Cohn, W. F., Jones, S. M., & Miesfeldt, A. (2001). Factors influencing patients’ decisions to decline cancer genetic counseling services. J Genet Counsel, 10(1), 25–40.
Green, M. J., Peterson, S. K., Wagner Baker, M., Friedman, L. C., Harper, G. R., Rubinstein, W. S., et al. (2005). Use of an educational computer program before genetic counseling for breast cancer susceptibility: Effects on duration and content of counseling sessions. Genet Med, 7(4), 221–229.
Green, M. J., Peterson, S. K., Wagner Baker, M., Friedman, L. C., Harper, G. R., Rubinstein, W. S., et al. (2004). Effect of a computer-based decision aid on knowledge, perceptions and intentions about genetic testing for breast cancer susceptibility: A randomized trial. JAMA, 292(4), 442–452.
Green, M. J. (1998–2000). Breast Cancer Risk and Genetic Testing, Version 2.0. CD-ROM. Wisconsin Alumni Research Foundation.
Hallowell, N., & Murton, F. (1998). The value of written summaries of genetic consultations. Patient Educ Couns, 35(1), 27–34.
Hirschhorn, K., et al. (1999). Duty to re-contact. Genet Med, 1(4), 171–172.
Julian-Reynier, C., Eisinger, F., Chabal, F., Aurran, Y., Bignon, Y. –J., Nogues, C., et al. (1998). Cancer genetic clinics: Why do women who already have cancer attend? Eur J Cancer, 34(10), 1549–1553.
Kash, K. M., Ortega-Verdejo, K., Dabney, M. K., Holland, J. C., Miller, D. G., & Osborne, M. P. (2000). Psychosocial aspects of cancer genetics: Women at high risk for breast and ovarian cancer. Semin Surg Oncol, 18, 333–338.
Lea, D. H. (1996). Emerging quality improvement measures in genetic counseling. J Genet Counsel, 5(3), 123–137.
National Conference of State Legislatures, www.ncsl.org/programs/health/genetics/ndishlth.htm.
National Human Genome Research Institute, NIH, www.genome.gov/10002077.
NCI Cancer Genetics Services Directory, www.cancer.gov/search/geneticsservices/.
NSGC Familial Cancer Risk Counseling Special Interest Group Directory (2003).
Rosenthal, E. (2005). Patient attitudes towards follow-up letters in the cancer genetics clinic. 24th Annual Education Conference, Los Angeles, CA.
Stacey, D., DeGrasse, C., & Johnston, L. (2002). Addressing the support needs of women at high risk for breast cancer: Evidence-based care by advanced practice nurses. Oncol Nurs Forum, 29(6), E77–E84.
Watson, M., Lloyd, S., Davidson, J., Meyer, L., Eeles, R., Ebbs, S., et al. (1999). The impact of genetic counseling on risk perception and mental health in women with a family history of breast cancer. Br J Cancer, 79(5–6), 868–874.
ACKNOWLEDGMENTS
This work was supported by the Penn State Cancer Institute. The authors gratefully acknowledge Carol Weisman, Ph.D. for her helpful comments during the development of the survey instrument, Linda Nelson for providing administrative assistance in distributing the surveys, and to the patients who offered their insight by completing the survey so that others could benefit from their experiences.
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Kausmeyer, D.T., Lengerich, E.J., Kluhsman, B.C. et al. A Survey of Patients’ Experiences with the Cancer Genetic Counseling Process: Recommendations for Cancer Genetics Programs. J Genet Counsel 15, 409–431 (2006). https://doi.org/10.1007/s10897-006-9039-2
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DOI: https://doi.org/10.1007/s10897-006-9039-2