Abstract
Given the increased demand on genetic services, it is important to identify clients who may require relatively more extensive psychosocial support. This paper describes which client characteristics, as assessed in the first psycho-social counselling session, were associated with requiring relatively more psycho-social support (≥3 sessions) in the process of predictive testing for cancer. The study population consisted of 244 counselees for hereditary cancer. Data were derived from an electronic data-base, used by psycho-social workers for the systematic registration of relevant details of each counselling session. Data were analysed for two respective groups: (A) patients who had a known mutation in the family and (B) patients with an as yet unknown mutation in the family. Results show that two or more psychosocial sessions were given if the information derived from the first session indicated the client to have childhood experiences with cancer (in group A), to experience the family role and/or the psychological impact as burdensome (in both groups) or to experience the social impact as burdensome (in group B). We conclude that the first assessment by a psychosocial worker already provides valuable information on the psychological support needs of patients. These findings provide insight into possible problem areas for clients dealing with predictive genetic testing.
Similar content being viewed by others
References
American Society of Clinical Oncology (1996). Statement of the American Society of Clinical Oncology: Genetic testing for cancer susceptibility. Journal of Clinical Oncology, 14, 1730–1736.
American Society of Clinical Oncology (2003). Policy Statement update: genetic testing for cancer susceptibility. Journal of Clinical Oncology, 21, 2397–2406.
Billings, P. R., Kohn, M. A., de Cuevas, M., Beckwith, J., Alper, J. S., & Natowicz, M. R. (1992). Discrimination as a consequence of genetic testing. American Journal of Human Genetics, 50, 476–482.
Bleiker, E. M., Grosfeld, F. J., Hahn, D. E., & Honing, C. (2001). Psychosocial care in family cancer clinics in The Netherlands: A brief report. Patient Education and Counseling, 43, 205–209.
Bleiker, E. M., Hahn, D. E., & Aaronson, N. K. (2003). Psychosocial issues in cancer genetics-current status and future directions. Acta Oncologica, 42, 276–286.
Bottorff, J. L., Ratner, P. A., Johnson, J. L., Lovato, C. Y., & Joab, S. A. (1998). Communicating cancer risk information: The challenges of uncertainty. Patient Education and Counseling, 33, 67–81.
Broadstock, M., Michie, S., & Marteau, T. (2000). Psychological consequences of predictive genetic testing: a systematic review. European Journal of Human Genetics, 8, 731–738.
Claes, E., Evers-Kiebooms, G., Denayer, L., Decruyenaere, M., Boogaerts, A., Philippe, K., et al. (2005). Predictive genetic testing for hereditary breast and ovarian cancer: Psychological distress and illness representations 1 year following disclosure. Journal of Genetic Counseling, 14, 349–363.
Coyne, J. C., Benazon, N. R., Gaba, C. G., Calzone, K., & Weber, B. L. (2000). Distress and psychiatric morbidity among women from high-risk breast and ovarian cancer families. Journal of Consulting and Clinical Psychology, 68, 864–874.
DudokdeWit, A. C., Meijers-Heijboer, E. J., Tibben, A., Frets, P. G., Klijn, J. G., Devilee, P., et al. (1994). Effect on a Dutch family of predictive DNA-testing for hereditary breast and ovarian cancer. Lancet, 344, 197.
DudokdeWit, A. C., Tibben, A., Frets, P. G., Meijers-Heijboer, E. J., Devilee, P., Klijn, J. G., et al. (1997). BRCA1 in the family: A case description of the psychological implications. American Journal of Medical Genetics, 71, 63–71.
DudokdeWit, A. C., Tibben, A., Duivenvoorden, H. J., Niermeijer, M. F., & Passchier, J. (1998). Predicting adaptation to presymptomatic DNA testing for late onset disorders: Who will experience distress? Rotterdam Leiden Genetics Workgroup. Journal of Medical Genetics, 35, 745–754.
Erblich, J., Bovbjerg, D. H., & Valdimarsdottir, H. B. (2000). Looking forward and back: Distress among women at familial risk for breast cancer. Annals of Behavioral Med, 22, 53–59.
Forrest, L. E., Delatycki, M. B., Skene, L., & Aitken, M. (2007). Communicating genetic information in families—a review of guidelines and position papers. European Journal of Human Genetics, 15, 612–618.
Fox Chase Center. (1996). Genetic counseling protocol. Cheltenham, PA.
France, L., Gray, J., Elwyn, G., Tischkowitz, M., Brain, K., Sampson, J., et al. (1999). Genetic testing considerations in breast cancer patients. Journal of Genetic Counseling, 8, 289–299.
Giardiello, F. M. (1997). Genetic testing in hereditary colorectal cancer. JAMA, 278, 1278–1281.
Homsma, S. J. M., Huijgen, R., Middeldorp, S., Sijbrands, E. J. G., & Kastelein, J. J. P. (2008). Molucular screening for familial hypercholesterolemia: Consequences for life and disability insurance. European Journal of Human Genetics, 16, 14–17.
Hopwood, P., Keeling, F., Long, A., Pool, C., Evans, G., & Howell, A. (1998). Psychological support needs for women at high genetic risk of breast cancer: Some preliminary indicators. Psychooncology, 7, 402–412.
Hopwood, P., Shenton, A., Lalloo, F., Evans, D. G., & Howell, A. (2001). Risk perception and cancer worry: An exploratory study of the impact of genetic risk counselling in women with a family history of breast cancer. Journal of Medical Genetics, 38, 139.
Kinzler, K. W., Nilbert, M. C., Su, L. K., Vogelstein, B., Bryan, T., Levey, D. B., et al. (1991). Identification of FAP locus genes from chromosome 5q21. Science, 253, 661–665.
Lapham, E. V., Kozma, C., & Weiss, J. O. (1996). Genetic discrimination: Perspectives of consumers. Science, 274, 621–624.
Lerman, C., Daly, M., Masny, A., & Balshem, A. (1994). Attitudes about genetic testing for breast-ovarian cancer susceptibility. Journal of Clinical Oncology, 12, 843–850.
Lerman, C., Hughes, C., Lemon, S. J., Main, D., Snyder, C., Durham, C., et al. (1998). What you don't know can hurt you: Adverse psychologic effects in members of BRCA1-linked and BRCA2-linked families who decline genetic testing. Journal of Clinical Oncology, 16, 1650–1654.
Lynch, H. T., & Smyrk T. (1996). Hereditary nonpolyposis colorectal cancer (Lynch syndrome); an updated review. Cancer, 78, 1149–1167.
Lynch, H. T., Lemon, S. J., Durham, C., Tinley, S. T., Connolly, C., Lynch, J. F., et al. (1997). A descriptive study of BRCA1 testing and reactions to disclosure of test results. Cancer, 79, 2219–2228.
Marang-van de Mheen, P. J., van Maarle, M. C., & Stouthard, M. E. A. (2002). Getting insurance after genetic screening on familial hypercholesterolemia; the need to educate both insurers and the public to increase adherence to national guidelines in the Netherlands. Journal of Epidemiology and Community Health, 5692, 145–147.
Marteau, T. M., & Croyle, R. T. (1998). The new genetics. Psychological responses to genetic testing. BMJ, 316, 693–696.
Menko, F. H., Verheijen, R. H. M., van Asperen, C. J., Rutgers, E., van’t Veer, L., & Wigbout, G. (1995). Amsterdam Protocol Erfelijke en Familiaire Tumoren, Concept Richtlijnen 1995/1996 [Amsterdam protocol for hereditary and familiar tumors, concept manual 1995/1996] Internal report. Amsterdam, The Netherlands.
Menko, F. H., Ligtenberg, M. J., Brouwer, T., Hahn, D. E., & Ausems, M. G. (2007). DNA-based diagnosis of hereditary tumour predisposition (in Dutch) (DNAdiagnostiek naar erfelijke aanleg voor tumoren: Een overzicht met aanbevelingen voor de praktijk). Nederlands Tijdschrift voor Geneeskunde, 151, 295–298.
Mesters, I., Ausems, M., Eichhorn, S., & Vasen, H. (2005). Informing one’s family about genetic testing for hereditary non-polyposis colorectal cancer (HNPCC): A retrospective exploratory study. Fam Cancer, 4, 163–167.
Michie, S., Bobrow, M., & Marteau, T. M. (2001). Predictive genetic testing in children and adults: A study of emotional impact. Journal of Medical Genetics, 38, 519–526.
Miki, Y., Swensen, J., Shattuck-Eidens, D., Futreal, P. A., Harshman, K., Tavtigian, S., et al. (1994). A strong candidate for the breast and ovarian cancer susceptibility gene BRCA1. Science, 266, 66–71.
National Action Plan on Breast Cancer. (1996). Position paper on hereditary susceptibility testing for breast cancer. Washington DC.
Peters, J. A., & Stopfer, J. E. (1996). Role of the genetic counselor in familial cancer. Oncology, 10, 159–166, 175.
Peterson, E. A., Milliron, K. J., Lewis, K. E., Goold, S. D., & Merajver, S. D. (2002). Health insurance and discrimination concerns and BRCA1/2 testing in a clinic population. Epidemiology Biomarkers and Prevention, 11, 79–87.
van Oostrom, I., Meijers-Heijboer, H., Duivenvoorden, H. J., Bröcker-Vriends, A. H. T. J., van Asperen, C. J., Sijmons, R. H., et al. (2006). Experience of parental cancer in childhood is a risk factor for psychological distress during genetic cancer susceptibility testing. Annals of Oncology, 17, 1090–1095.
van Oostrom, I., Meijers-Heijboer, H., Duivenvoorden, H. J., Bröcker-Vriends, A. H. T. J., van Asperen, C. J., Sijmons, R. H., et al. (2007). Prognostic factors for hereditary cancer distress six months after BRCA 1/2 or HNPCC genetic susceptibility testing. European Journal of Cancer, 43, 71–77.
Vasen, H. F., Mecklin, J. P., Khan, P. M., & Lynch, H. T. (1991). The International Collaborative Group on hereditary Non-Polyposis Collorectal Cancer (ICG-HNPCC). Diseases of the Colon & Rectum, 34, 424–425.
Wellisch, D. K., Gritz, E. R., Schain, W., Wang, H. J., & Siau, J. (1992). Psychological functioning of daughters of breast cancer patients. Part II: Characterizing the distressed daughter of the breast cancer patient. Psychosomatics, 33, 171–179.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Mollema, E.D., Smets, E.M.A., Richard, M.E. et al. Psycho-social Counselling in Predictive Genetic Testing for Cancer: The Association Between Number of Supportive Sessions and Client Characteristics as Assessed by Psycho-social Workers. J Genet Counsel 17, 480–488 (2008). https://doi.org/10.1007/s10897-008-9166-z
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10897-008-9166-z