Abstract
The aim of the present cross-sectional study was to investigate psychological distress, changes in life, adherence to surveillance programs and satisfaction with cancer genetic counseling based on Swedish participants’ self-reported data. A total of 218 probands (72% response rate) affected by breast, breast/ovarian or colorectal cancer and/or a family history of cancer were surveyed 3–7 years after receiving cancer genetic counseling. Participants reported a relatively high level of anxiety and a low level of depression. Probands affected by colorectal cancer reported a higher level of depression than did non-affected individuals with a family history of colorectal cancer. Overall, the participants reported moderate changes in family relations, priorities and appreciation of daily life activities. The majority of at-risk probands reportedly adhered to recommended surveillance programs. The mean level of satisfaction with cancer genetic counseling was high. About half of the participants would have accepted additional counseling sessions, contact with a psychologist or further help concerning informing family members. The present results indicate no adverse effects of genetic counseling, but they do suggest that typical counseling procedures could be improved by provision of additional psychosocial support.
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Aylard, P. R., Gooding, J. H., McKenna, P. J., & Snaith, R. P. (1987). A validation study of three anxiety and depression self-assessment scales. Journal of Psychosomatic Research, 31(2), 261–268. doi:10.1016/0022-3999(87)90083-3.
Bjelland, I., Dahl, A. A., Haug, T. T., & Neckelmann, D. (2002). The validity of the hospital anxiety and depression scale. an updated literature review. Journal of Psychosomatic Research, 52(2), 69–77. doi:10.1016/S0022-3999(01)00296-3.
Bish, A., Sutton, S., Jacobs, C., Levene, S., Ramirez, A., & Hodgson, S. (2002). Changes in psychological distress after cancer genetic counselling: a comparison of affected and unaffected women. British Journal of Cancer, 86(1), 43–50. doi:10.1038/sj.bjc.6600030.
Bleiker, E. M., Aaronson, N. K., Menko, F. H., Hahn, D. E., van Asperen, C. J., Rutgers, E. J., et al. (1997). Genetic counseling for hereditary cancer: a pilot study on experiences of patients and family members. Patient Education and Counseling, 32(1–2), 107–116. doi:10.1016/S0738-3991(97)00067-0.
Brain, K., Gray, J., Norman, P., France, E., Anglim, C., Barton, G., et al. (2000). Randomized trial of a specialist genetic assessment service for familial breast cancer. Journal of the National Cancer Institute, 92(16), 1345–1351. doi:10.1093/jnci/92.16.1345.
Braithwaite, D., Emery, J., Walter, F., Prevost, A. T., & Sutton, S. (2006). Psychological impact of genetic counseling for familial cancer: a systematic review and meta-analysis. Familial Cancer, 5(1), 61–75. doi:10.1007/s10689-005-2577-1.
Bundek, N. I., Marks, G., & Richardson, J. L. (1993). Role of health locus of control beliefs in cancer screening of elderly Hispanic women. Health Psychology, 12(3), 193–199. doi:10.1037/0278-6133.12.3.193.
Claes, E., Denayer, L., Evers-Kiebooms, G., Boogaerts, A., & Legius, E. (2004). Predictive testing for hereditary non-polyposis colorectal cancer: Motivation, illness representations and short-term psychological impact. Patient Education and Counseling, 55(2), 265274. doi:10.1016/j.pec.2003.11.002.
Cull, A., Anderson, E. D., Campbell, S., Mackay, J., Smyth, E., & Steel, M. (1999). The impact of genetic counseling about breast cancer risk on women’s risk perceptions and levels of distress. British Journal of Cancer, 79(3–4), 501–508. doi:10.1038/sj.bjc.6690078.
Erblich, J., Bovbjerg, D. H., & Valdimarsdottir, H. B. (2000). Psychological distress, health beliefs, and frequency of breast self-examination. Journal of Behavioral Medicine, 23(3), 277–292. doi:10.1023/A:1005510109233.
Forrest, K., Simpson, S. A., Wilson, B. J., van Teijlingen, E. R., McKee, L., Haites, N., et al. (2003). To tell or not to tell: barriers and facilitators in family communication about genetic risk. Clinical Genetics, 64(4), 317–326. doi:10.1034/j.1399-0004.2003.00142.x.
Foster, C., Watson, M., Eeles, R., Eccles, D., Ashley, S., Davidson, R., et al. (2007). Predictive genetic testing for BRCA1/2 in a UK clinical cohort: Three-year follow-up. British Journal of Cancer, 96(5), 718–724. doi:10.1038/sj.bjc.6603610.
Fredette, S. L. (1995). Breast cancer survivors: Concerns and coping. Cancer Nursing, 18(1), 35–46. doi:10.1097/00002820-199502000-00006.
Hackshaw, A. K., & Paul, E. A. (2003). Breast self-examination and death from breast cancer: a meta-analysis. British Journal of Cancer, 88(7), 1047–1053. doi:10.1038/sj.bjc.6600847.
Hallal, J. C. (1982). The relationship of health beliefs, health locus of control, and self concept to the practice of breast self-examination in adult women. Nursing Research, 31(3), 137–142. doi:10.1097/00006199-198205000-00003.
Herrmann, C. (1997). International experiences with the hospital anxiety and depression scale: a review of validation data and clinical results. Journal of Psychosomatic Research, 42(1), 17–41. doi:10.1016/S0022-3999(96)00216-4.
Hill, D., White, V., Jolley, D., & Mapperson, K. (1988). Self examination of the breast: is it beneficial? meta-analysis of studies investigating breast self examination and extent of disease in patients with breast cancer. British Medical Journal, 297(6643), 271–275.
Holm, C. J., Frank, D. I., & Curtin, J. (1999). Health beliefs, health locus of control, and women’s mammography behavior. Cancer Nursing, 22(2), 149–156. doi:10.1097/00002820-199904000-00007.
Jazieh, A. R., Foraida, M., Ghouse, M., Khalil, M. M., Kopp, M., & Savidge, M. (2006). The impact of cancer diagnosis on the lifestyle and habits of patients served at a veterans administration hospital. Journal of Cancer Education, 21(3), 147–150. doi:10.1207/s15430154jce2103_12.
Kellen, E., Vansant, G., Christiaens, M. R., Neven, P., & Van Limbergen, E. (2008). Lifestyle changes and breast cancer prognosis: a review. Breast Cancer Research and Treatment [Epub ahead of print].
Kent, G., Howie, H., Fletcher, M., Newbury-Ecob, R., & Hosie, K. (2000). The relationship between perceived risk, thought intrusiveness and emotional well-being in women receiving counselling for breast cancer risk in a family history clinic. British Journal of Health Psychology, 5, 15–26. doi:10.1348/135910700168739.
Kilbride, L., Smith, G., & Grant, R. (2007). The frequency and cause of anxiety and depression amongst patients with malignant brain tumours between surgery and radiotherapy. Journal of Neuro-Oncology, 84(3), 297–304. doi:10.1007/s11060-007-9374-7.
Kincey, J. (1981). Internal-external control and weight loss in the obese: predictive and discriminant validity and some possible clinical implications. Journal of Clinical Psychology, 37(1), 100–103. doi:10.1002/1097-4679(198101)37:1<100::AID-JCLP2270370118>3.0.CO;2-G.
Maddux, B. A., Sbraccia, P., Kumakura, S., Sasson, S., Youngren, J., Fisher, A., et al. (1995). Membrane glycoprotein PC-1 and insulin resistance in non-insulin-dependent diabetes mellitus. Nature, 373(6513), 448–451. doi:10.1038/373448a0.
McCready, T., Littlewood, D., & Jenkinson, J. (2005). Breast self-examination and breast awareness: a literature review. Journal of Clinical Nursing, 14(5), 570–578. doi:10.1111/j.1365-2702.2004.01108.x.
McKinnon, W., Naud, S., Ashikaga, T., Colletti, R., & Wood, M. (2007). Results of an intervention for individuals and families with BRCA mutations: a model for providing medical updates and psychosocial support following genetic testing. Journal of Genetic Counseling, 16(4), 433–456. doi:10.1007/s10897-006-9078-8.
Nordin, K., & Glimelius, B. (1997). Psychological reactions in newly diagnosed gastrointestinal cancer patients. Acta Oncologica (Stockholm, Sweden), 36(8), 803–810. doi:10.3109/02841869709001361.
Peterson, S. K., Watts, B. G., Koehly, L. M., Vernon, S. W., Baile, W. F., Kohlmann, W. K., et al. (2003). How families communicate about HNPCC genetic testing: findings from a qualitative study. American Journal of Medical Genetics. Part C, Seminars in Medical Genetics, 119(1), 78–86.
Redeker, N. S. (1988). Health beliefs and adherence in chronic illness. Image–the Journal of Nursing Scholarship, 20(1), 31–35. doi:10.1111/j.1547-5069.1988.tb00026.x.
Reichelt, J. G., Heimdal, K., Moller, P., & Dahl, A. A. (2004). BRCA1 testing with definitive results: a prospective study of psychological distress in a large clinic-based sample. Familial Cancer, 3(1), 21–28. doi:10.1023/B:FAME.0000026820.32469.4a.
Resta, R., Biesecker, B. B., Bennett, R. L., Blum, S., Hahn, S. E., Strecker, M. N., et al. (2006). A new definition of genetic counseling: national society of genetic counselors’ task force report. Journal of Genetic Counseling, 15, 77–83. doi:10.1007/s10897-005-9014-3.
Satia, J. A., Campbell, M. K., Galanko, J. A., James, A., Carr, C., & Sandler, R. S. (2004). Longitudinal changes in lifestyle behaviors and health status in colon cancer survivors. Cancer Epidemiology, Biomarkers & Prevention, 13(6), 1022–1031.
Spector, D. (2007). Lifestyle behaviors in women with a BRCA1 or BRCA2 genetic mutation: an exploratory study guided by concepts derived from the health belief model. Cancer Nursing, 30(1), E1–E10. doi:10.1097/00002820-200701000-00015.
Trepanier, A., Ahrens, M., McKinnon, W., Peters, J., Stopfer, J., Grumet, S. C., et al. (2004). Genetic cancer risk assessment and counseling: recommendations of the national society of genetic counselors. Journal of Genetic Counseling, 13(2), 83–114. doi:10.1023/B:JOGC.0000018821.48330.77.
Utley, R. (1999). The evolving meaning of cancer for long-term survivors of breast cancer. Oncology Nursing Forum, 26(9), 1519–1523.
Vadaparampil, S. T., Miree, C. A., Wilson, C., & Jacobsen, P. B. (2006). Psychosocial and behavioral impact of genetic counseling and testing. Breast Disease, 27, 97–108.
van Oostrom, I., Meijers-Heijboer, H., Lodder, L. N., Duivenvoorden, H. J., van Gool, A. R., Seynaeve, C., et al. (2003). Long-term psychological impact of carrying a BRCA1/2 mutation and prophylactic surgery: a 5-year follow-up study. Journal of Clinical Oncology, 21(20), 3867–3874. doi:10.1200/JCO.2003.10.100.
van Oostrom, I., Meijers-Heijboer, H., Duivenvoorden, H. J., Brocker-Vriends, A. H., van Asperen, C. J., Sijmons, R. H., et al. (2007). A prospective study of the impact of genetic susceptibility testing for BRCA1/2 or HNPCC on family relationships. Psycho-Oncology, 16(4), 320–328. doi:10.1002/pon.1062.
Van Riper, M., & McKinnon, W. C. (2004). Genetic testing for breast and ovarian cancer susceptibility: a family experience. Journal of Midwifery & Women’s Health, 49(3), 210–219. doi:10.1016/S1526-9523(04)00022-4.
Wagner, A., van Kessel, I., Kriege, M. G., Tops, C. M., Wijnen, J. T., Vasen, H. F., et al. (2005). Long term follow-up of HNPCC gene mutation carriers: compliance with screening and satisfaction with counseling and screening procedures. Familial Cancer, 4(4), 295–300. doi:10.1007/s10689-005-0658-9.
Wallston, K. A. (2005). The validity of the multidimensional health locus of control scales. Journal of Health Psychology, 10(5), 623–631. doi:10.1177/1359105305055304.
Wallston, K. A., Wallston, B. S., & DeVellis, R. (1978). Development of the Multidimensional Health Locus of Control (MHLC) Scales. Health Education Monographs, 6(2), 160–170.
Watson, M., Lloyd, S., Davidson, J., Meyer, L., Eeles, R., Ebbs, S., et al. (1999). The impact of genetic counselling on risk perception and mental health in women with a family history of breast cancer. British Journal of Cancer, 79(5–6), 868–874. doi:10.1038/sj.bjc.6690139.
Wewers, M. E., & Lowe, N. K. (1990). A critical review of visual analogue scales in the measurement of clinical phenomena. Research in Nursing & Health, 13(4), 227–236. doi:10.1002/nur.4770130405.
Wooldridge, K. L., Wallston, K. A., Graber, A. L., Brown, A. W., & Davidson, P. (1992). The relationship between health beliefs, adherence, and metabolic control of diabetes. The Diabetes Educator, 18(6), 495–500. doi:10.1177/014572179201800608.
Zigmond, A. S., & Snaith, R. P. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica, 67(6), 361–370. doi:10.1111/j.1600-0447.1983.tb09716.x.
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This study would not have been possible without the contribution of the individuals who participated in the study and the financial support of the Swedish Cancer Society.
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Hayat Roshanai, A., Rosenquist, R., Lampic, C. et al. Cancer Genetic Counselees’ Self-Reported Psychological Distress, Changes in Life, and Adherence to Recommended Surveillance Programs 3–7 Years Post Counseling. J Genet Counsel 18, 185–194 (2009). https://doi.org/10.1007/s10897-008-9203-y
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DOI: https://doi.org/10.1007/s10897-008-9203-y