Skip to main content
Erschienen in: Journal of Genetic Counseling 2/2014

01.04.2014 | Review Article

Specific Psychosocial Issues of Individuals Undergoing Genetic Counseling for Cancer – A Literature Review

verfasst von: Willem Eijzenga, Daniela EE Hahn, Neil K Aaronson, Irma Kluijt, Eveline MA Bleiker

Erschienen in: Journal of Genetic Counseling | Ausgabe 2/2014

Einloggen, um Zugang zu erhalten

Abstract

Approximately 25 % of individuals undergoing genetic counseling for cancer experiences clinically relevant levels of distress, anxiety and/or depression. However, these general psychological outcomes that are used in many studies do not provide detailed information on the specific psychosocial problems experienced by counselees. The aim of this review was to investigate the specific psychosocial issues encountered by individuals undergoing genetic counseling for cancer, and to identify overarching themes across these issues. A literature search was performed, using four electronic databases (PubMed, PsychInfo, CINAHL and Embase). Papers published between January 2000 and January 2013 were selected using combinations, and related indexing terms of the keywords: ‘genetic counseling’, ‘psychology’ and ‘cancer’. In total, 25 articles met our inclusion criteria. We identified the specific issues addressed by these papers, and used meta-ethnography to identify the following six overarching themes: coping with cancer risk, practical issues, family issues, children-related issues, living with cancer, and emotions. A large overlap in the specific issues and themes was found between these studies, suggesting that research on specific psychosocial problems within genetic counseling has reached a point of saturation. As a next step, efforts should be made to detect and monitor these problems of counselees at an early stage within the genetic counseling process.
Literatur
Zurück zum Zitat Aktan-Collan, K. I., Kaariainen, H. A., Kolttola, E. M., Pylvanainen, K., Jarvinen, H. J., Haukkala, A. H., et al. (2011). Sharing genetic risk with next generation: mutation-positive parents’ communication with their offspring in Lynch Syndrome. Familial Cancer, 10, 43–50.PubMedCrossRef Aktan-Collan, K. I., Kaariainen, H. A., Kolttola, E. M., Pylvanainen, K., Jarvinen, H. J., Haukkala, A. H., et al. (2011). Sharing genetic risk with next generation: mutation-positive parents’ communication with their offspring in Lynch Syndrome. Familial Cancer, 10, 43–50.PubMedCrossRef
Zurück zum Zitat Appleton, S., Fry, A., Rees, G., Rush, R., & Cull, A. (2000). Psychosocial effects of living with an increased risk of breast cancer: an exploratory study using telephone focus groups. Psycho-Oncology, 9, 511–521.PubMedCrossRef Appleton, S., Fry, A., Rees, G., Rush, R., & Cull, A. (2000). Psychosocial effects of living with an increased risk of breast cancer: an exploratory study using telephone focus groups. Psycho-Oncology, 9, 511–521.PubMedCrossRef
Zurück zum Zitat Atkins, S., Lewin, S., Smith, H., Engel, M., Fretheim, A., & Volmink, J. (2008). Conducting a meta-ethnography of qualitative literature: lessons learnt. BMC Medical Research Methodology, 8, 21.PubMedCentralPubMedCrossRef Atkins, S., Lewin, S., Smith, H., Engel, M., Fretheim, A., & Volmink, J. (2008). Conducting a meta-ethnography of qualitative literature: lessons learnt. BMC Medical Research Methodology, 8, 21.PubMedCentralPubMedCrossRef
Zurück zum Zitat Bakos, A. D., Hutson, S. P., Loud, J. T., Peters, J. A., Giusti, R. M., & Greene, M. H. (2008). BRCA mutation-negative women from hereditary breast and ovarian cancer families: a qualitative study of the BRCA-negative experience. Health Expectations, 11, 220–231.PubMedCentralPubMedCrossRef Bakos, A. D., Hutson, S. P., Loud, J. T., Peters, J. A., Giusti, R. M., & Greene, M. H. (2008). BRCA mutation-negative women from hereditary breast and ovarian cancer families: a qualitative study of the BRCA-negative experience. Health Expectations, 11, 220–231.PubMedCentralPubMedCrossRef
Zurück zum Zitat Bennett, P., Parsons, E., Brain, K., & Hood, K. (2010). Long-term cohort study of women at intermediate risk of familial breast cancer: experiences of living at risk. Psycho-Oncology, 19, 390–398.PubMedCrossRef Bennett, P., Parsons, E., Brain, K., & Hood, K. (2010). Long-term cohort study of women at intermediate risk of familial breast cancer: experiences of living at risk. Psycho-Oncology, 19, 390–398.PubMedCrossRef
Zurück zum Zitat Bjorvatn, C., Eide, G. E., Hanestad, B. R., Oyen, N., Havik, O. E., Carlsson, A., et al. (2007). Risk perception, worry and satisfaction related to genetic counseling for hereditary cancer. Journal of Genetic Counseling, 16, 211–222.PubMedCrossRef Bjorvatn, C., Eide, G. E., Hanestad, B. R., Oyen, N., Havik, O. E., Carlsson, A., et al. (2007). Risk perception, worry and satisfaction related to genetic counseling for hereditary cancer. Journal of Genetic Counseling, 16, 211–222.PubMedCrossRef
Zurück zum Zitat Bjorvatn, C., Eide, G. E., Hanestad, B. R., & Havik, O. E. (2008). Anxiety and depression among subjects attending genetic counseling for hereditary cancer. Patient Education and Counseling, 71, 234–243.PubMedCrossRef Bjorvatn, C., Eide, G. E., Hanestad, B. R., & Havik, O. E. (2008). Anxiety and depression among subjects attending genetic counseling for hereditary cancer. Patient Education and Counseling, 71, 234–243.PubMedCrossRef
Zurück zum Zitat 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 Epidemiology, Biomarkers & Prevention, 11, 97–104. 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 Epidemiology, Biomarkers & Prevention, 11, 97–104.
Zurück zum Zitat Bradbury, A. R., Patrick-Miller, L., Egleston, B. L., Olopade, O. I., Daly, M. B., Moore, C. W., et al. (2012). When parents disclose BRCA1/2 test results: their communication and perceptions of offspring response. Cancer, 118, 3417–3425.PubMedCentralPubMedCrossRef Bradbury, A. R., Patrick-Miller, L., Egleston, B. L., Olopade, O. I., Daly, M. B., Moore, C. W., et al. (2012). When parents disclose BRCA1/2 test results: their communication and perceptions of offspring response. Cancer, 118, 3417–3425.PubMedCentralPubMedCrossRef
Zurück zum Zitat Brady, M. J., Cella, D. F., Mo, F., Bonomi, A. E., Tulsky, D. S., Lloyd, S. R., et al. (1997). Reliability and validity of the Functional Assessment of Cancer Therapy-Breast quality-of-life instrument. Journal of Clinical Oncology, 15, 974–986.PubMed Brady, M. J., Cella, D. F., Mo, F., Bonomi, A. E., Tulsky, D. S., Lloyd, S. R., et al. (1997). Reliability and validity of the Functional Assessment of Cancer Therapy-Breast quality-of-life instrument. Journal of Clinical Oncology, 15, 974–986.PubMed
Zurück zum Zitat 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, 61–75.PubMedCrossRef 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, 61–75.PubMedCrossRef
Zurück zum Zitat Britten, N., Campbell, R., Pope, C., Donovan, J., Morgan, M., & Pill, R. (2002). Using meta ethnography to synthesise qualitative research: a worked example. Journal of Health Services Research & Policy, 7, 209–215.CrossRef Britten, N., Campbell, R., Pope, C., Donovan, J., Morgan, M., & Pill, R. (2002). Using meta ethnography to synthesise qualitative research: a worked example. Journal of Health Services Research & Policy, 7, 209–215.CrossRef
Zurück zum Zitat Broadstock, M., Michie, S., & Marteau, T. (2000). Psychological consequences of predictive genetic testing: a systematic review. European Journal of Human Genetics, 8, 731–738.PubMedCrossRef Broadstock, M., Michie, S., & Marteau, T. (2000). Psychological consequences of predictive genetic testing: a systematic review. European Journal of Human Genetics, 8, 731–738.PubMedCrossRef
Zurück zum Zitat Butow, P. N., Lobb, E. A., Meiser, B., Barratt, A., & Tucker, K. M. (2003). Psychological outcomes and risk perception after genetic testing and counselling in breast cancer: a systematic review. The Medical Journal of Australia, 178, 77–81.PubMed Butow, P. N., Lobb, E. A., Meiser, B., Barratt, A., & Tucker, K. M. (2003). Psychological outcomes and risk perception after genetic testing and counselling in breast cancer: a systematic review. The Medical Journal of Australia, 178, 77–81.PubMed
Zurück zum Zitat Campbell, R., Pound, P., Morgan, M., Daker-White, G., Britten, N., Pill, R., et al. (2011). Evaluating meta-ethnography: systematic analysis and synthesis of qualitative research. Health Technology Assessment, 15, 1–164.PubMed Campbell, R., Pound, P., Morgan, M., Daker-White, G., Britten, N., Pill, R., et al. (2011). Evaluating meta-ethnography: systematic analysis and synthesis of qualitative research. Health Technology Assessment, 15, 1–164.PubMed
Zurück zum Zitat Carlsson, C., & Nilbert, M. (2007). Living with hereditary non-polyposis colorectal cancer; experiences from and impact of genetic testing. Journal of Genetic Counseling, 16, 811–820.PubMedCrossRef Carlsson, C., & Nilbert, M. (2007). Living with hereditary non-polyposis colorectal cancer; experiences from and impact of genetic testing. Journal of Genetic Counseling, 16, 811–820.PubMedCrossRef
Zurück zum Zitat Cheung, E. L., Olson, A. D., Yu, T. M., Han, P. Z., & Beattie, M. S. (2010). Communication of BRCA results and family testing in 1,103 high-risk women. Cancer Epidemiology, Biomarkers & Prevention, 19, 2211–2219.CrossRef Cheung, E. L., Olson, A. D., Yu, T. M., Han, P. Z., & Beattie, M. S. (2010). Communication of BRCA results and family testing in 1,103 high-risk women. Cancer Epidemiology, Biomarkers & Prevention, 19, 2211–2219.CrossRef
Zurück zum Zitat Claes, E., Evers-Kiebooms, G., Boogaerts, A., Decruyenaere, M., Denayer, L., & Legius, E. (2003). Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients. American Journal of Medical Genetics. Part A, 116A, 11–19.PubMedCrossRef Claes, E., Evers-Kiebooms, G., Boogaerts, A., Decruyenaere, M., Denayer, L., & Legius, E. (2003). Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients. American Journal of Medical Genetics. Part A, 116A, 11–19.PubMedCrossRef
Zurück zum Zitat 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.PubMedCrossRef 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.PubMedCrossRef
Zurück zum Zitat Crump, R. J., Fitzgerald, R. P., & Legge, M. (2010). ‘Going-to-have-cancerness’: a study of living with increased risk of BRCA1 and BRCA2 mutations for six South Island women. Journal of Primary Health Care, 2, 311–317.PubMed Crump, R. J., Fitzgerald, R. P., & Legge, M. (2010). ‘Going-to-have-cancerness’: a study of living with increased risk of BRCA1 and BRCA2 mutations for six South Island women. Journal of Primary Health Care, 2, 311–317.PubMed
Zurück zum Zitat d’Agincourt-Canning, L. (2006). A gift or a yoke? Women’s and men’s responses to genetic risk information from BRCA1 and BRCA2 testing. Clinical Genetics, 70, 462–472.PubMedCrossRef d’Agincourt-Canning, L. (2006). A gift or a yoke? Women’s and men’s responses to genetic risk information from BRCA1 and BRCA2 testing. Clinical Genetics, 70, 462–472.PubMedCrossRef
Zurück zum Zitat Di Prospero, L. S., Seminsky, M., Honeyford, J., Doan, B., Franssen, E., Meschino, W., et al. (2001). Psychosocial issues following a positive result of genetic testing for BRCA1 and BRCA2 mutations: findings from a focus group and a needs-assessment survey. CMAJ, 164, 1005–1009.PubMedCentralPubMed Di Prospero, L. S., Seminsky, M., Honeyford, J., Doan, B., Franssen, E., Meschino, W., et al. (2001). Psychosocial issues following a positive result of genetic testing for BRCA1 and BRCA2 mutations: findings from a focus group and a needs-assessment survey. CMAJ, 164, 1005–1009.PubMedCentralPubMed
Zurück zum Zitat Dixon-Woods, M., Agarwal, S., Jones, D., Young, B., & Sutton, A. (2005). Synthesising qualitative and quantitative evidence: a review of possible methods. Journal of Health Services Research & Policy, 10, 45–53.CrossRef Dixon-Woods, M., Agarwal, S., Jones, D., Young, B., & Sutton, A. (2005). Synthesising qualitative and quantitative evidence: a review of possible methods. Journal of Health Services Research & Policy, 10, 45–53.CrossRef
Zurück zum Zitat Douglas, H. A., Hamilton, R. J., & Grubs, R. E. (2009). The effect of BRCA gene testing on family relationships: A thematic analysis of qualitative interviews. Journal of Genetic Counseling, 18, 418–435.PubMedCrossRef Douglas, H. A., Hamilton, R. J., & Grubs, R. E. (2009). The effect of BRCA gene testing on family relationships: A thematic analysis of qualitative interviews. Journal of Genetic Counseling, 18, 418–435.PubMedCrossRef
Zurück zum Zitat Douma, K. F., Aaronson, N. K., Vasen, H. F., & Bleiker, E. M. (2008). Psychosocial issues in genetic testing for familial adenomatous polyposis: a review of the literature. Psycho-Oncology, 17, 737–745.PubMedCrossRef Douma, K. F., Aaronson, N. K., Vasen, H. F., & Bleiker, E. M. (2008). Psychosocial issues in genetic testing for familial adenomatous polyposis: a review of the literature. Psycho-Oncology, 17, 737–745.PubMedCrossRef
Zurück zum Zitat Douma, K. F., Aaronson, N. K., Vasen, H. F., Gerritsma, M. A., Gundy, C. M., Janssen, E. P., et al. (2010). Psychological distress and use of psychosocial support in familial adenomatous polyposis. Psycho-Oncology, 19, 289–298.PubMedCrossRef Douma, K. F., Aaronson, N. K., Vasen, H. F., Gerritsma, M. A., Gundy, C. M., Janssen, E. P., et al. (2010). Psychological distress and use of psychosocial support in familial adenomatous polyposis. Psycho-Oncology, 19, 289–298.PubMedCrossRef
Zurück zum Zitat 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, Seminars in Medical Genetics, 148C, 47–55.PubMedCrossRef 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, Seminars in Medical Genetics, 148C, 47–55.PubMedCrossRef
Zurück zum Zitat Ersig, A. L., Williams, J. K., Hadley, D. W., & Koehly, L. M. (2009). Communication, encouragement, and cancer screening in families with and without mutations for hereditary nonpolyposis colorectal cancer: a pilot study. Genetics in Medicine, 11, 728–734.PubMedCentralPubMedCrossRef Ersig, A. L., Williams, J. K., Hadley, D. W., & Koehly, L. M. (2009). Communication, encouragement, and cancer screening in families with and without mutations for hereditary nonpolyposis colorectal cancer: a pilot study. Genetics in Medicine, 11, 728–734.PubMedCentralPubMedCrossRef
Zurück zum Zitat Esplen, M. J., Madlensky, L., Aronson, M., Rothenmund, H., Gallinger, S., Butler, K., et al. (2007). Colorectal cancer survivors undergoing genetic testing for hereditary non-polyposis colorectal cancer: motivational factors and psychosocial functioning. Clinical Genetics, 72, 394–401.PubMedCrossRef Esplen, M. J., Madlensky, L., Aronson, M., Rothenmund, H., Gallinger, S., Butler, K., et al. (2007). Colorectal cancer survivors undergoing genetic testing for hereditary non-polyposis colorectal cancer: motivational factors and psychosocial functioning. Clinical Genetics, 72, 394–401.PubMedCrossRef
Zurück zum Zitat Frost, C. J., Venne, V., Cunningham, D., & Gerritsen-McKane, R. (2004). Decision making with uncertain information: learning from women in a high risk breast cancer clinic. Journal of Genetic Counseling, 13, 221–236.PubMedCrossRef Frost, C. J., Venne, V., Cunningham, D., & Gerritsen-McKane, R. (2004). Decision making with uncertain information: learning from women in a high risk breast cancer clinic. Journal of Genetic Counseling, 13, 221–236.PubMedCrossRef
Zurück zum Zitat Gallacher, K., Jani, B., Morrison, D., Macdonald, S., Blane, D., Erwin, P., et al. (2013). Qualitative Systematic Reviews of Treatment Burden in Stroke, Heart Failure and Diabetes - Methodological Challenges and Solutions. BMC Medical Research Methodology, 13, 10.PubMedCentralPubMedCrossRef Gallacher, K., Jani, B., Morrison, D., Macdonald, S., Blane, D., Erwin, P., et al. (2013). Qualitative Systematic Reviews of Treatment Burden in Stroke, Heart Failure and Diabetes - Methodological Challenges and Solutions. BMC Medical Research Methodology, 13, 10.PubMedCentralPubMedCrossRef
Zurück zum Zitat Garber, J. E., & Offit, K. (2005). Hereditary cancer predisposition syndromes. Journal of Clinical Oncology, 23, 276–292.PubMedCrossRef Garber, J. E., & Offit, K. (2005). Hereditary cancer predisposition syndromes. Journal of Clinical Oncology, 23, 276–292.PubMedCrossRef
Zurück zum Zitat Hallowell, N., Foster, C., Eeles, R., Ardern-Jones, A., & Watson, M. (2004). Accommodating risk: responses to BRCA1/2 genetic testing of women who have had cancer. Social Science & Medicine, 59, 553–565.CrossRef Hallowell, N., Foster, C., Eeles, R., Ardern-Jones, A., & Watson, M. (2004). Accommodating risk: responses to BRCA1/2 genetic testing of women who have had cancer. Social Science & Medicine, 59, 553–565.CrossRef
Zurück zum Zitat Hallowell, N., Ardern-Jones, A., Eeles, R., Foster, C., Lucassen, A., Moynihan, C., et al. (2005). Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: patterns, priorities and problems. Clinical Genetics, 67, 492–502.PubMedCrossRef Hallowell, N., Ardern-Jones, A., Eeles, R., Foster, C., Lucassen, A., Moynihan, C., et al. (2005). Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: patterns, priorities and problems. Clinical Genetics, 67, 492–502.PubMedCrossRef
Zurück zum Zitat Hallowell, N., Arden-Jones, A., Eeles, R., Foster, C., Lucassen, A., Moynihan, C., et al. (2006). Guilt, blame and responsibility: men’s understanding of their role in the transmission of BRCA1/2 mutations within their family. Sociology of Health & Illness, 28, 969–988.CrossRef Hallowell, N., Arden-Jones, A., Eeles, R., Foster, C., Lucassen, A., Moynihan, C., et al. (2006). Guilt, blame and responsibility: men’s understanding of their role in the transmission of BRCA1/2 mutations within their family. Sociology of Health & Illness, 28, 969–988.CrossRef
Zurück zum Zitat Hamilton, R., & Hurley, K. E. (2010). Conditions and consequences of a BRCA mutation in young, single women of childbearing age. Oncology Nursing Forum, 37, 627–634.PubMedCrossRef Hamilton, R., & Hurley, K. E. (2010). Conditions and consequences of a BRCA mutation in young, single women of childbearing age. Oncology Nursing Forum, 37, 627–634.PubMedCrossRef
Zurück zum Zitat Hamilton, J. G., Lobel, M., & Moyer, A. (2009a). Emotional distress following genetic testing for hereditary breast and ovarian cancer: a meta-analytic review. Health Psychology, 28, 510–518.PubMedCentralPubMedCrossRef Hamilton, J. G., Lobel, M., & Moyer, A. (2009a). Emotional distress following genetic testing for hereditary breast and ovarian cancer: a meta-analytic review. Health Psychology, 28, 510–518.PubMedCentralPubMedCrossRef
Zurück zum Zitat Hamilton, R., Williams, J. K., Skirton, H., & Bowers, B. J. (2009b). Living with genetic test results for hereditary breast and ovarian cancer. Journal of Nursing Scholarship, 41, 276–283.PubMedCrossRef Hamilton, R., Williams, J. K., Skirton, H., & Bowers, B. J. (2009b). Living with genetic test results for hereditary breast and ovarian cancer. Journal of Nursing Scholarship, 41, 276–283.PubMedCrossRef
Zurück zum Zitat Kasparian, N. A., Wakefield, C. E., & Meiser, B. (2007). Assessment of psychosocial outcomes in genetic counseling research: an overview of available measurement scales. Journal of Genetic Counseling, 16, 693–712.PubMedCrossRef Kasparian, N. A., Wakefield, C. E., & Meiser, B. (2007). Assessment of psychosocial outcomes in genetic counseling research: an overview of available measurement scales. Journal of Genetic Counseling, 16, 693–712.PubMedCrossRef
Zurück zum Zitat Kasparian, N. A., Meiser, B., Butow, P. N., Simpson, J. M., & Mann, G. J. (2008). Predictors of psychological distress among individuals with a strong family history of malignant melanoma. Clinical Genetics, 73, 121–131.PubMedCrossRef Kasparian, N. A., Meiser, B., Butow, P. N., Simpson, J. M., & Mann, G. J. (2008). Predictors of psychological distress among individuals with a strong family history of malignant melanoma. Clinical Genetics, 73, 121–131.PubMedCrossRef
Zurück zum Zitat Keller, M., Jost, R., Haunstetter, C. M., Sattel, H., Schroeter, C., Bertsch, U., et al. (2008). Psychosocial outcome following genetic risk counselling for familial colorectal cancer. A comparison of affected patients and family members. Clinical Genetics, 74, 414–424.PubMedCrossRef Keller, M., Jost, R., Haunstetter, C. M., Sattel, H., Schroeter, C., Bertsch, U., et al. (2008). Psychosocial outcome following genetic risk counselling for familial colorectal cancer. A comparison of affected patients and family members. Clinical Genetics, 74, 414–424.PubMedCrossRef
Zurück zum Zitat Kenen, R., Ardern-Jones, A., & Eeles, R. (2003). Living with chronic risk: healthy women with a family history of breast/ovarian cancer. Health, Risk & Society, 5, 315–331.CrossRef Kenen, R., Ardern-Jones, A., & Eeles, R. (2003). Living with chronic risk: healthy women with a family history of breast/ovarian cancer. Health, Risk & Society, 5, 315–331.CrossRef
Zurück zum Zitat Lammens, C. R., Aaronson, N. K., Wagner, A., Sijmons, R. H., Ausems, M. G., Vriends, A. H., et al. (2010). Genetic testing in Li-Fraumeni syndrome: uptake and psychosocial consequences. Journal of Clinical Oncology, 28, 3008–3014.PubMedCrossRef Lammens, C. R., Aaronson, N. K., Wagner, A., Sijmons, R. H., Ausems, M. G., Vriends, A. H., et al. (2010). Genetic testing in Li-Fraumeni syndrome: uptake and psychosocial consequences. Journal of Clinical Oncology, 28, 3008–3014.PubMedCrossRef
Zurück zum Zitat Landsbergen, K. M., Prins, J. B., Brunner, H. G., & Hoogerbrugge, N. (2009a). Genetic testing offered directly after the diagnosis of colorectal cancer: a pilot study on the reactions of patients. Genetic Counseling, 20, 317–325.PubMed Landsbergen, K. M., Prins, J. B., Brunner, H. G., & Hoogerbrugge, N. (2009a). Genetic testing offered directly after the diagnosis of colorectal cancer: a pilot study on the reactions of patients. Genetic Counseling, 20, 317–325.PubMed
Zurück zum Zitat Landsbergen, K. M., Prins, J. B., Brunner, H. G., Kraaimaat, F. W., & Hoogerbrugge, N. (2009b). Genetic testing for Lynch syndrome in the first year of colorectal cancer: a review of the psychological impact. Familial Cancer, 8, 325–337.PubMedCentralPubMedCrossRef Landsbergen, K. M., Prins, J. B., Brunner, H. G., Kraaimaat, F. W., & Hoogerbrugge, N. (2009b). Genetic testing for Lynch syndrome in the first year of colorectal cancer: a review of the psychological impact. Familial Cancer, 8, 325–337.PubMedCentralPubMedCrossRef
Zurück zum Zitat Lim, J., Macluran, M., Price, M., Bennett, B., & Butow, P. (2004). Short- and long-term impact of receiving genetic mutation results in women at increased risk for hereditary breast cancer. Journal of Genetic Counseling, 13, 115–133.PubMedCrossRef Lim, J., Macluran, M., Price, M., Bennett, B., & Butow, P. (2004). Short- and long-term impact of receiving genetic mutation results in women at increased risk for hereditary breast cancer. Journal of Genetic Counseling, 13, 115–133.PubMedCrossRef
Zurück zum Zitat Lindor, N. M., McMaster, M. L., Lindor, C. J., & Greene, M. H. (2008). Concise handbook of familial cancer susceptibility syndromes - second edition. Journal of the National Cancer Institute. Monographs, 1–93. Lindor, N. M., McMaster, M. L., Lindor, C. J., & Greene, M. H. (2008). Concise handbook of familial cancer susceptibility syndromes - second edition. Journal of the National Cancer Institute. Monographs, 1–93.
Zurück zum Zitat Lodder, L., Frets, P. G., Trijsburg, R. W., Tibben, A., Meijers-Heijboer, E. J., Duivenvoorden, H. J., et al. (2001). Men at risk of being a mutation carrier for hereditary breast/ovarian cancer: an exploration of attitudes and psychological functioning during genetic testing. European Journal of Human Genetics, 9, 492–500.PubMedCrossRef Lodder, L., Frets, P. G., Trijsburg, R. W., Tibben, A., Meijers-Heijboer, E. J., Duivenvoorden, H. J., et al. (2001). Men at risk of being a mutation carrier for hereditary breast/ovarian cancer: an exploration of attitudes and psychological functioning during genetic testing. European Journal of Human Genetics, 9, 492–500.PubMedCrossRef
Zurück zum Zitat MacDonald, D. J., Sarna, L., Weitzel, J. N., & Ferrell, B. (2010). Women’s perceptions of the personal and family impact of genetic cancer risk assessment: focus group findings. Journal of Genetic Counseling, 19, 148–160.PubMedCrossRef MacDonald, D. J., Sarna, L., Weitzel, J. N., & Ferrell, B. (2010). Women’s perceptions of the personal and family impact of genetic cancer risk assessment: focus group findings. Journal of Genetic Counseling, 19, 148–160.PubMedCrossRef
Zurück zum Zitat Maheu, C. (2009). Implications of living with a strong family history of breast cancer. Canadian Journal of Nursing Research, 41, 100–112.PubMed Maheu, C. (2009). Implications of living with a strong family history of breast cancer. Canadian Journal of Nursing Research, 41, 100–112.PubMed
Zurück zum Zitat McCann, S., MacAuley, D., Barnett, Y., Bunting, B., Bradley, A., Jeffers, L., et al. (2009). Family communication, genetic testing and colonoscopy screening in hereditary non-polyposis colon cancer: a qualitative study. Psycho-Oncology, 18, 1208–1215.PubMedCrossRef McCann, S., MacAuley, D., Barnett, Y., Bunting, B., Bradley, A., Jeffers, L., et al. (2009). Family communication, genetic testing and colonoscopy screening in hereditary non-polyposis colon cancer: a qualitative study. Psycho-Oncology, 18, 1208–1215.PubMedCrossRef
Zurück zum Zitat Meiser, B. (2005). Psychological impact of genetic testing for cancer susceptibility: an update of the literature. Psycho-Oncology, 14, 1060–1074.PubMedCrossRef Meiser, B. (2005). Psychological impact of genetic testing for cancer susceptibility: an update of the literature. Psycho-Oncology, 14, 1060–1074.PubMedCrossRef
Zurück zum Zitat Meiser, B., Butow, P., Friedlander, M., Barratt, A., Schnieden, V., Watson, M., et al. (2002). Psychological impact of genetic testing in women from high-risk breast cancer families. European Journal of Cancer, 38, 2025–2031.PubMedCrossRef Meiser, B., Butow, P., Friedlander, M., Barratt, A., Schnieden, V., Watson, M., et al. (2002). Psychological impact of genetic testing in women from high-risk breast cancer families. European Journal of Cancer, 38, 2025–2031.PubMedCrossRef
Zurück zum Zitat Meiser, B., Tucker, K., Friedlander, M., Barlow-Stewart, K., Lobb, E., Saunders, C., et al. (2008). Genetic counselling and testing for inherited gene mutations in newly diagnosed patients with breast cancer: a review of the existing literature and a proposed research agenda. Breast Cancer Research, 10, 216.PubMedCentralPubMedCrossRef Meiser, B., Tucker, K., Friedlander, M., Barlow-Stewart, K., Lobb, E., Saunders, C., et al. (2008). Genetic counselling and testing for inherited gene mutations in newly diagnosed patients with breast cancer: a review of the existing literature and a proposed research agenda. Breast Cancer Research, 10, 216.PubMedCentralPubMedCrossRef
Zurück zum Zitat Mellon, S., Gold, R., Janisse, J., Cichon, M., Tainsky, M. A., Simon, M. S., et al. (2008). Risk perception and cancer worries in families at increased risk of familial breast/ovarian cancer. Psycho-Oncology, 17, 756–766.PubMedCentralPubMedCrossRef Mellon, S., Gold, R., Janisse, J., Cichon, M., Tainsky, M. A., Simon, M. S., et al. (2008). Risk perception and cancer worries in families at increased risk of familial breast/ovarian cancer. Psycho-Oncology, 17, 756–766.PubMedCentralPubMedCrossRef
Zurück zum Zitat Mendes, A. F., Santos, T. A., & Sousa, L. (2011). Experiencing genetic counselling for hereditary cancers: the client’s perspective. European Journal of Cancer Care (Engl), 20, 204–211.CrossRef Mendes, A. F., Santos, T. A., & Sousa, L. (2011). Experiencing genetic counselling for hereditary cancers: the client’s perspective. European Journal of Cancer Care (Engl), 20, 204–211.CrossRef
Zurück zum Zitat Mireskandari, S., Sangster, J., Meiser, B., Thewes, B., Groombridge, C., Spigelman, A., et al. (2009). Psychosocial impact of familial adenomatous polyposis on young adults: a qualitative study. Journal of Genetic Counseling, 18, 409–417.PubMedCrossRef Mireskandari, S., Sangster, J., Meiser, B., Thewes, B., Groombridge, C., Spigelman, A., et al. (2009). Psychosocial impact of familial adenomatous polyposis on young adults: a qualitative study. Journal of Genetic Counseling, 18, 409–417.PubMedCrossRef
Zurück zum Zitat Noblit, G. W., & Hare, R. D. (1988). Meta-Ethnography: Synthesizing Qualitative Studies. London: Sage. Noblit, G. W., & Hare, R. D. (1988). Meta-Ethnography: Synthesizing Qualitative Studies. London: Sage.
Zurück zum Zitat Pasacreta, J. V. (2003). Psychosocial issues associated with genetic testing for breast and ovarian cancer risk: an integrative review. Cancer Investigation, 21, 588–623.PubMedCrossRef Pasacreta, J. V. (2003). Psychosocial issues associated with genetic testing for breast and ovarian cancer risk: an integrative review. Cancer Investigation, 21, 588–623.PubMedCrossRef
Zurück zum Zitat Patenaude, A. F., Dorval, M., DiGianni, L. S., Schneider, K. A., Chittenden, A., & Garber, J. E. (2006). Sharing BRCA1/2 test results with first-degree relatives: factors predicting who women tell. Journal of Clinical Oncology, 24, 700–706.PubMedCrossRef Patenaude, A. F., Dorval, M., DiGianni, L. S., Schneider, K. A., Chittenden, A., & Garber, J. E. (2006). Sharing BRCA1/2 test results with first-degree relatives: factors predicting who women tell. Journal of Clinical Oncology, 24, 700–706.PubMedCrossRef
Zurück zum Zitat Payne, K., Nicholls, S., McAllister, M., Macleod, R., Donnai, D., & Davies, L. M. (2008). Outcome measurement in clinical genetics services: a systematic review of validated measures. Value in Health, 11, 497–508.PubMedCrossRef Payne, K., Nicholls, S., McAllister, M., Macleod, R., Donnai, D., & Davies, L. M. (2008). Outcome measurement in clinical genetics services: a systematic review of validated measures. Value in Health, 11, 497–508.PubMedCrossRef
Zurück zum Zitat Pound, P., Britten, N., Morgan, M., Yardley, L., Pope, C., Daker-White, G., et al. (2005). Resisting medicines: a synthesis of qualitative studies of medicine taking. Social Science & Medicine, 61, 133–155.CrossRef Pound, P., Britten, N., Morgan, M., Yardley, L., Pope, C., Daker-White, G., et al. (2005). Resisting medicines: a synthesis of qualitative studies of medicine taking. Social Science & Medicine, 61, 133–155.CrossRef
Zurück zum Zitat 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.PubMedCrossRef 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.PubMedCrossRef
Zurück zum Zitat Riley, B. D., Culver, J. O., Skrzynia, C., Senter, L. A., Peters, J. A., Costalas, J. W., et al. (2012). Essential elements of genetic cancer risk assessment, counseling, and testing: updated recommendations of the National Society of Genetic Counselors. Journal of Genetic Counseling, 21, 151–161.PubMedCrossRef Riley, B. D., Culver, J. O., Skrzynia, C., Senter, L. A., Peters, J. A., Costalas, J. W., et al. (2012). Essential elements of genetic cancer risk assessment, counseling, and testing: updated recommendations of the National Society of Genetic Counselors. Journal of Genetic Counseling, 21, 151–161.PubMedCrossRef
Zurück zum Zitat Ring, N., Jepson, R., & Ritchie, K. (2011). Methods of synthesizing qualitative research studies for health technology assessment. International Journal of Technology Assessment in Health Care, 27, 384–390.PubMedCrossRef Ring, N., Jepson, R., & Ritchie, K. (2011). Methods of synthesizing qualitative research studies for health technology assessment. International Journal of Technology Assessment in Health Care, 27, 384–390.PubMedCrossRef
Zurück zum Zitat Schlich-Bakker, K. J., ten Kroode, H. F., & Ausems, M. G. (2006a). A literature review of the psychological impact of genetic testing on breast cancer patients. Patient Education and Counseling, 62, 13–20.PubMedCrossRef Schlich-Bakker, K. J., ten Kroode, H. F., & Ausems, M. G. (2006a). A literature review of the psychological impact of genetic testing on breast cancer patients. Patient Education and Counseling, 62, 13–20.PubMedCrossRef
Zurück zum Zitat Schlich-Bakker, K. J., Warlam-Rodenhuis, C. C., van Echtelt, J., van den Bout, J., Ausems, M. G., & ten Kroode, H. F. (2006b). Short term psychological distress in patients actively approached for genetic counselling after diagnosis of breast cancer. European Journal of Cancer, 42, 2722–2728.PubMedCrossRef Schlich-Bakker, K. J., Warlam-Rodenhuis, C. C., van Echtelt, J., van den Bout, J., Ausems, M. G., & ten Kroode, H. F. (2006b). Short term psychological distress in patients actively approached for genetic counselling after diagnosis of breast cancer. European Journal of Cancer, 42, 2722–2728.PubMedCrossRef
Zurück zum Zitat Sprangers, M. A., te Velde, A., & Aaronson, N. K. (1999). The construction and testing of the EORTC colorectal cancer-specific quality of life questionnaire module (QLQ-CR38). European Organization for Research and Treatment of Cancer Study Group on Quality of Life. European Journal of Cancer, 35, 238–247.PubMedCrossRef Sprangers, M. A., te Velde, A., & Aaronson, N. K. (1999). The construction and testing of the EORTC colorectal cancer-specific quality of life questionnaire module (QLQ-CR38). European Organization for Research and Treatment of Cancer Study Group on Quality of Life. European Journal of Cancer, 35, 238–247.PubMedCrossRef
Zurück zum Zitat Street, R. L., Jr., Makoul, G., Arora, N. K., & Epstein, R. M. (2009). How does communication heal? Pathways linking clinician-patient communication to health outcomes. Patient Education and Counseling, 74, 295–301.PubMedCrossRef Street, R. L., Jr., Makoul, G., Arora, N. K., & Epstein, R. M. (2009). How does communication heal? Pathways linking clinician-patient communication to health outcomes. Patient Education and Counseling, 74, 295–301.PubMedCrossRef
Zurück zum Zitat Stromsvik, N., Raheim, M., Oyen, N., & Gjengedal, E. (2009). Men in the women’s world of hereditary breast and ovarian cancer–a systematic review. Familial Cancer, 8, 221–229.PubMedCrossRef Stromsvik, N., Raheim, M., Oyen, N., & Gjengedal, E. (2009). Men in the women’s world of hereditary breast and ovarian cancer–a systematic review. Familial Cancer, 8, 221–229.PubMedCrossRef
Zurück zum Zitat Stromsvik, N., Raheim, M., Oyen, N., Engebretsen, L. F., & Gjengedal, E. (2010). Stigmatization and male identity: Norwegian males’ experience after identification as BRCA1/2 mutation carriers. Journal of Genetic Counseling, 19, 360–370.PubMedCrossRef Stromsvik, N., Raheim, M., Oyen, N., Engebretsen, L. F., & Gjengedal, E. (2010). Stigmatization and male identity: Norwegian males’ experience after identification as BRCA1/2 mutation carriers. Journal of Genetic Counseling, 19, 360–370.PubMedCrossRef
Zurück zum Zitat Stroup, A. M., & Smith, K. R. (2007). Familial effects of BRCA1 genetic mutation testing: changes in perceived family functioning. Cancer Epidemiology, Biomarkers & Prevention, 16, 135–141.CrossRef Stroup, A. M., & Smith, K. R. (2007). Familial effects of BRCA1 genetic mutation testing: changes in perceived family functioning. Cancer Epidemiology, Biomarkers & Prevention, 16, 135–141.CrossRef
Zurück zum Zitat Tercyak, K. P., Peshkin, B. N., DeMarco, T. A., Brogan, B. M., & Lerman, C. (2002). Parent–child factors and their effect on communicating BRCA1/2 test results to children. Patient Education and Counseling, 47, 145–153.PubMedCrossRef Tercyak, K. P., Peshkin, B. N., DeMarco, T. A., Brogan, B. M., & Lerman, C. (2002). Parent–child factors and their effect on communicating BRCA1/2 test results to children. Patient Education and Counseling, 47, 145–153.PubMedCrossRef
Zurück zum Zitat Tercyak, K. P., Peshkin, B. N., DeMarco, T. A., Patenaude, A. F., Schneider, K. A., Garber, J. E., et al. (2007). Information needs of mothers regarding communicating BRCA1/2 cancer genetic test results to their children. Genetic Testing, 11, 249–255.PubMedCentralPubMedCrossRef Tercyak, K. P., Peshkin, B. N., DeMarco, T. A., Patenaude, A. F., Schneider, K. A., Garber, J. E., et al. (2007). Information needs of mothers regarding communicating BRCA1/2 cancer genetic test results to their children. Genetic Testing, 11, 249–255.PubMedCentralPubMedCrossRef
Zurück zum Zitat 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, 83–114.PubMedCrossRef 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, 83–114.PubMedCrossRef
Zurück zum Zitat Turner-Cobb, J. M., Bloor, L. E., Whittemore, A. S., West, D., & Spiegel, D. (2006). Disengagement and social support moderate distress among women with a family history of breast cancer. The Breast Journal, 12, 7–15.PubMedCrossRef Turner-Cobb, J. M., Bloor, L. E., Whittemore, A. S., West, D., & Spiegel, D. (2006). Disengagement and social support moderate distress among women with a family history of breast cancer. The Breast Journal, 12, 7–15.PubMedCrossRef
Zurück zum Zitat 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.PubMed 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.PubMed
Zurück zum Zitat Vadaparampil, S. T., Quinn, G. P., Brzosowicz, J., & Miree, C. A. (2008). Experiences of genetic counseling for BRCA1/2 among recently diagnosed breast cancer patients: a qualitative inquiry. Journal of Psychosocial Oncology, 26, 33–52.PubMedCrossRef Vadaparampil, S. T., Quinn, G. P., Brzosowicz, J., & Miree, C. A. (2008). Experiences of genetic counseling for BRCA1/2 among recently diagnosed breast cancer patients: a qualitative inquiry. Journal of Psychosocial Oncology, 26, 33–52.PubMedCrossRef
Zurück zum Zitat Vos, J., van Asperen, C. J., Oosterwijk, J. C., Menko, F. H., Collee, M . J., Garcia, E. G. et al. (2013). The counselees’ self-reported request for psychological help in genetic counseling for hereditary breast/ovarian cancer: not only psychopathology matters. Psycho-Oncology, 22, 902–910. Vos, J., van Asperen, C. J., Oosterwijk, J. C., Menko, F. H., Collee, M . J., Garcia, E. G. et al. (2013). The counselees’ self-reported request for psychological help in genetic counseling for hereditary breast/ovarian cancer: not only psychopathology matters. Psycho-Oncology, 22, 902–910.
Zurück zum Zitat Wagner Costalas, J., Itzen, M., Malick, J., Babb, J. S., Bove, B., Godwin, A. K., et al. (2003). Communication of BRCA1 and BRCA2 results to at-risk relatives: a cancer risk assessment program’s experience. American Journal of Medical Genetics. Part C, Seminars in Medical Genetics, 119C, 11–18.PubMedCrossRef Wagner Costalas, J., Itzen, M., Malick, J., Babb, J. S., Bove, B., Godwin, A. K., et al. (2003). Communication of BRCA1 and BRCA2 results to at-risk relatives: a cancer risk assessment program’s experience. American Journal of Medical Genetics. Part C, Seminars in Medical Genetics, 119C, 11–18.PubMedCrossRef
Zurück zum Zitat Walter, F. M., Emery, J., Braithwaite, D., & Marteau, T. M. (2004). Lay understanding of familial risk of common chronic diseases: a systematic review and synthesis of qualitative research. Annals of Family Medicine, 2, 583–594.PubMedCentralPubMedCrossRef Walter, F. M., Emery, J., Braithwaite, D., & Marteau, T. M. (2004). Lay understanding of familial risk of common chronic diseases: a systematic review and synthesis of qualitative research. Annals of Family Medicine, 2, 583–594.PubMedCentralPubMedCrossRef
Metadaten
Titel
Specific Psychosocial Issues of Individuals Undergoing Genetic Counseling for Cancer – A Literature Review
verfasst von
Willem Eijzenga
Daniela EE Hahn
Neil K Aaronson
Irma Kluijt
Eveline MA Bleiker
Publikationsdatum
01.04.2014
Verlag
Springer US
Erschienen in
Journal of Genetic Counseling / Ausgabe 2/2014
Print ISSN: 1059-7700
Elektronische ISSN: 1573-3599
DOI
https://doi.org/10.1007/s10897-013-9649-4

Weitere Artikel der Ausgabe 2/2014

Journal of Genetic Counseling 2/2014 Zur Ausgabe

Update Gynäkologie

Bestellen Sie unseren Fach-Newsletter und bleiben Sie gut informiert – ganz bequem per eMail.