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Hereditary Cancer in Clinical Practice
Published in: Hereditary Cancer in Clinical Practice 2/2007

Open Access 01-12-2007 | Research

Colorectal Cancer in the Family: Psychosocial Distress and Social Issues in the Years Following Genetic Counselling

Authors: Eveline MA Bleiker, Fred H Menko, Irma Kluijt, Babs G Taal, Miranda A Gerritsma, Lidwina DV Wever, Neil K Aaronson

Published in: Hereditary Cancer in Clinical Practice | Issue 2/2007

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Abstract

Background

This study examined: (1) levels of cancer-specific distress more than one year after genetic counselling for hereditary nonpolyposis colorectal cancer (HNPCC); (2) associations between sociodemographic, clinical and psychosocial factors and levels of distress; (3) the impact of genetic counselling on family relationships, and (4) social consequences of genetic counselling.

Methods

In this cross-sectional study, individuals who had received genetic counselling for HNPCC during 1986–1998 completed a self-report questionnaire by mail.

Results

116 individuals (81% response rate) completed the questionnaire, on average 4 years after the last counselling session. Of all respondents, 6% had clinically significant levels of cancer-specific distress (Impact of Event Scale, IES). Having had contact with a professional psychosocial worker for cancer risk in the past 10 years was significantly associated with higher levels of current cancer specific distress. Only a minority of the counselees reported any adverse effects of genetic counselling on: communication about genetic counselling with their children (9%), family relationships (5%), obtaining life insurance (8%), choice or change of jobs (2%), and obtaining a mortgage (2%).

Conclusion

On average, four years after genetic counselling for HNPCC, only a small minority of counselled individuals reports clinically significant levels of distress, or significant family or social problems.
Literature
1.
Lynch HT, de la Chapelle A: Hereditary colorectal cancer. N Engl J Med 2003, 348: 919–932. 10.1056/NEJMra012242CrossRefPubMed
2.
Slattery ML, Kerber RA: Family history of cancer and colon cancer risk: the Utah Population Database. J Natl Cancer Inst 1994, 86: 1618–1626. 10.1093/jnci/86.21.1618CrossRefPubMed
3.
Petersen GM, Brensinger JD, Johnson KA, Giardiello FM: Genetic testing and counseling for hereditary forms of colorectal cancer. Cancer 1999,86(11 Suppl):2540–2550. 10.1002/(SICI)1097-0142(19991201)86:11+<2540::AID-CNCR11>3.0.CO;2-8CrossRefPubMed
4.
Leach FS, Nicolaides NC, Papadopoulos N, Liu B, Jen J, Parsons R, Peltomaki P, Sistonen P, Aaltonen LA, Nystrom-Lahti M, et al.: Mutations of a mutS homolog in hereditary nonpolyposis colorectal cancer. Cell 1993, 75: 1215–1225. 10.1016/0092-8674(93)90330-SCrossRefPubMed
5.
Fishel R, Lescoe MK, Rao MR, Copeland NG, Jenkins NA, Garber J, Kane M, Kolodner R: The human mutator gene homolog MSH2 and its association with hereditary nonpolyposis colon cancer. Cell 1994, 77: 167. 10.1016/0092-8674(94)90306-9CrossRef
6.
Papadopoulos N, Nicolaides NC, Wei YF, Ruben SM, Carter KC, Rosen CA, Haseltine WA, Fleischmann RD, Fraser CM, Adams MD, et al.: Mutation of a mutL homolog in hereditary colon cancer. Science 1994, 263: 1625–1629. 10.1126/science.8128251CrossRefPubMed
7.
Bronner CE, Baker SM, Morrison PT, Warren G, Smith LG, Lescoe MK, Kane M, Earabino C, Lipford J, Lindblom A, et al.: Mutation in the DNA mismatch repair gene homologue hMLH1 is associated with hereditary non-polyposis colon cancer. Nature 1994, 368: 258–261. 10.1038/368258a0CrossRefPubMed
8.
Vasen HF, Wijnen JT, Menko FH, Kleibeuker JH, Taal BG, Griffioen G, Nagengast FM, Meijers-Heijboer EH, Bertario L, Varesco L, Bisgaard ML, Mohr J, Fodde R, Khan PM: Cancer risk in families with hereditary nonpolyposis colorectal cancer diagnosed by mutation analysis. Gastroenterology 1996, 110: 1020–1027. 10.1053/gast.1996.v110.pm8612988CrossRefPubMed
9.
Vasen HF, Mecklin JP, Khan PM, Lynch HT: The International Collaborative Group on Hereditary Non-Polyposis Colorectal Cancer (ICG-HNPCC). Dis Colon Rectum 1991, 34: 424–425. 10.1007/BF02053699CrossRefPubMed
10.
Vasen HF, Nagengast FM, Khan PM: Interval cancers in hereditary non-polyposis colorectal cancer (Lynch syndrome). Lancet 1995, 345: 1183–1184. 10.1016/S0140-6736(95)91016-6CrossRefPubMed
11.
Bleiker EM, Menko FH, Taal BG, Kluijt I, Wever LD, Gerritsma MA, Vasen HF, Aaronson NK: Screening behavior of individuals at high risk for colorectal cancer. Gastroenterology 2005, 128: 280–287. 10.1053/j.gastro.2004.11.002CrossRefPubMed
12.
Broadstock M, Michie S, Marteau T: Psychological consequences of predictive genetic testing: a systematic review. Eur J Hum Gen 2000, 8: 731–738. 10.1038/sj.ejhg.5200532CrossRef
13.
Braithwaite D, Emery J, Walter F, Prevost AT, Sutton S: Psychological impact of genetic counseling for familial cancer: a systematic review and meta-analysis. J Natl Cancer Inst 2004, 96: 122–133.CrossRefPubMed
14.
Meiser B, Collins V, Warren R, Gaff C, St John DJ, Young MA, Harrop K, Brown J, Halliday J: Psychological impact of genetic testing for hereditary non-polyposis colorectal cancer. Clin Genet 2004, 66: 502–511. 10.1111/j.1399-0004.2004.00339.xCrossRefPubMed
15.
Liljegren A, Lindgren G, Brandberg Y, Rotstein S, Nilsson B, Hatschek T, Jaramillo E, Lindblom A: Individuals with an increased risk of colorectal cancer: perceived benefits and psychological aspects of surveillance by means of regular colonoscopies. J Clin Oncol 2004, 22: 1736–1742. 10.1200/JCO.2004.04.138CrossRefPubMed
16.
Esplen MJ, Madlensky L, Butler K, McKinnon W, Bapat B, Wong J, Aronson M, Gallinger S: Motivations and psychosocial impact of genetic testing for HNPCC. Am J Med Genet 2001, 103: 9–15. 10.1002/ajmg.1493CrossRefPubMed
17.
Keller M, Jost R, Haunstetter CM, Kienle P, Knaebel HP, Gebert J, Sutter C, Knebel-Doeberitz M, Cremer F, Mazitschek U: Comprehensive genetic counseling for families at risk for HNPCC: impact on distress and perceptions. Genet Test 2002, 6: 291–302. 10.1089/10906570260471822CrossRefPubMed
18.
Vernon SW, Gritz ER, Peterson SK, Amos CI, Perz CA, Baile WF, Lynch PM: Correlates of psychologic distress in colorectal cancer patients undergoing genetic testing for hereditary colon cancer. Health Psychol 1997, 16: 73–86. 10.1037/0278-6133.16.1.73CrossRefPubMed
19.
Gritz ER, Peterson SK, Vernon SW, Marani SK, Baile WF, Watts BG, Amos CI, Frazier ML, Lynch PM: Psychological impact of genetic testing for hereditary nonpolyposis colorectal cancer. J Clin Oncol 2005, 23: 1902–1910. 10.1200/JCO.2005.07.102CrossRefPubMed
20.
Aktan-Collan K, Haukkala A, Mecklin JP, Uutela A, Kaariainen H: Psychological consequences of predictive genetic testing for hereditary non-polyposis colorectal cancer (HNPCC): a prospective follow-up study. Int J Cancer 2001, 93: 608–611. 10.1002/ijc.1372CrossRefPubMed
21.
Claes E, Denayer L, Evers-Kiebooms G, Boogaerts A, Legius E: Predictive testing for hereditary non-polyposis colorectal cancer: motivation, illness representations and short-term psychological impact. Patient Educ Couns 2004, 55: 265–274. 10.1016/j.pec.2003.11.002CrossRefPubMed
22.
Claes E, Evers-Kiebooms G, Denayer L, Decruyenaere M, Boogaerts A, Philippe K, Legius E: Predictive genetic testing for hereditary breast and ovarian cancer: psychological distress and illness representations 1 year following disclosure. J Genet Couns 2005, 14: 349–363. 10.1007/s10897-005-1371-4CrossRefPubMed
23.
Collins V, Halliday J, Warren R, Williamson R: Cancer worries, risk perceptions and associations with interest in DNA testing and clinic satisfaction in a familial colorectal cancer clinic. Clin Genet 2000, 58: 460–468. 10.1034/j.1399-0004.2000.580606.xCrossRefPubMed
24.
Hopwood P: Psychosocial aspects of risk communication and mutation testing in familial breast-ovarian cancer. Curr Opin Oncol 2005, 17: 340–344. 10.1097/01.cco.0000166653.15546.06CrossRefPubMed
25.
Richards M: Families, kinship and genetics. In The Troubled Helix: Social and Psychological Implications of the New Human Genetics. Edited by: Marteau T, Richards M. Cambridge University Press; 1996:249–273.CrossRef
26.
Peterson SK, Watts BG, Koehly LM, Vernon SW, Baile WF, Kohlmann WK, Gritz ER: How families communicate about HNPCC genetic testing: findings from a qualitative study. Am J Med Genet C Semin Med Genet 2003, 119: 78–86. 10.1002/ajmg.c.10010CrossRef
27.
Mesters I, Ausems M, Eichhorn S, Vasen H: Informing one's family about genetic testing for hereditary non-polyposis colorectal cancer (HNPCC): a retrospective exploratory study. Fam Cancer 2005, 4: 163–167. 10.1007/s10689-004-7992-1CrossRefPubMed
28.
Claes E, Evers-Kiebooms G, Boogaerts A, Decruyenaere M, Denayer L, Legius E: Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients. Am J Med Genet 2003, 116: 11–19. 10.1002/ajmg.a.10868CrossRef
29.
Hughes C, Lerman C, Schwartz M, Peshkin BN, Wenzel L, Narod S, Corio C, Tercyak KP, Hanna D, Isaacs C, Main D: All in the family: evaluation of the process and content of sisters' communication about BRCA1 and BRCA2 genetic test results. Am J Med Genet 2002, 107: 143–150. 10.1002/ajmg.10110CrossRefPubMed
30.
DudokdeWit AC, Tibben A, Frets PG, Meijers-Heijboer EJ, Devilee P, Klijn JG, Oosterwijk JC, Niermeijer MF: BRCA1 in the family: a case description of the psychological implications. Am J Med Genet 1997, 71: 63–71. 10.1002/(SICI)1096-8628(19970711)71:1<63::AID-AJMG12>3.0.CO;2-TCrossRefPubMed
31.
Wilson BJ, Forrest K, van Teijlingen ER, McKee L, Haites N, Matthews E, Simpson SA: Family communication about genetic risk: the little that is known. Community Genet 2004, 7: 15–24. 10.1159/000080300CrossRefPubMed
32.
Bassford TL, Hauck L: Human Genome Project and cancer: the ethical implications for clinical practice. Semin Oncol Nurs 1993, 9: 134–138. 10.1016/S0749-2081(05)80025-7CrossRefPubMed
33.
Norum J, Tranebjaerg L: Health, life and disability insurance and hereditary risk for breast or colorectal cancer. Acta Oncol 2000, 39: 189–93. 10.1080/028418600430752CrossRefPubMed
34.
Armstrong K, Weber B, Fitzgerald G, Hershey JC, Pauly MV, Lemaire J, Subramanian K, Asch DA: Life insurance and breast cancer risk assessment: adverse selection, genetic testing decisions, and discrimination. Am J Med Genet A 2003, 120: 359–364. 10.1002/ajmg.a.20025CrossRef
35.
Aktan-Collan K, Haukkala A, Kaariainen H: Life and health insurance behaviour of individuals having undergone a predictive genetic testing programme for hereditary non-polyposis colorectal cancer. Community Genet 2001, 4: 219–224. 10.1159/000064196CrossRefPubMed
36.
Smith KR, Ellington L, Chan AY, Croyle RT, Botkin JR: Fertility intentions following testing for a BRCA1 gene mutation. Cancer Epidemiol Biomarkers Prev 2004, 13: 733–740. 10.1158/1055-9965.EPI-461-2CrossRefPubMed
37.
Lerman C, Seay J, Balshem A, Audrain J: Interest in genetic testing among first-degree relatives of breast cancer patients. Am J Med Genet 1995, 57: 385–392. 10.1002/ajmg.1320570304CrossRefPubMed
38.
Wellisch DK, Gritz ER, Schain W, Wang HJ, Siau J: Psychological functioning of daughters of breast cancer patients. Part II: Characterizing the distressed daughter of the breast cancer patient. Psychosomatics 1992, 33: 171–179.CrossRefPubMed
39.
Horowitz M, Wilner N, Alvarez W: Impact of Event Scale: a measure of subjective stress. Psychosom Med 1979, 41: 209–218.CrossRefPubMed
40.
Brom D, Kleber RJ: De schok verwerkingslijst [Impact of Event Scale]. Ned Tijdschr Psychol 1985, 40: 164–168.
41.
Zakowski SG, Valdimarsdottir HB, Bovbjerg DH, Borgen P, Holland J, Kash K, Miller D, Mitnick J, Osborne M, Van Zee K: Predictors of intrusive thoughts and avoidance in women with family histories of breast cancer. Ann Behav Med 1997, 19: 362–369. 10.1007/BF02895155CrossRefPubMed
42.
Thewes B, Meiser B, Hickie IB: Psychometric properties of the Impact of Event Scale amongst women at increased risk for hereditary breast cancer. Psychooncology 2001, 10: 459–468. 10.1002/pon.533CrossRefPubMed
43.
Horowitz MJ: Stress response syndromes and their treatment. In Handbook of Stress: Theoretical and Clinical Aspects. Edited by: Goldberger L, Breznitz S. The Free Press; 1982:711–732.
44.
Kaasa S, Malt U, Hagen S, Wist E, Moum T, Kvikstad A: Psychological distress in cancer patients with advanced disease. Radiother Oncol 1993, 27: 193–197. 10.1016/0167-8140(93)90073-HCrossRefPubMed
45.
van Tulder MW, Aaronson NK, Bruning PF: The quality of life of long-term survivors of Hodgkin's disease. Ann Oncol 1994, 5: 153–158.PubMed
46.
Coyne JC, Benazon NR, Gaba CG, Calzone K, Weber BL: Distress and psychiatric morbidity among women from high-risk breast and ovarian cancer families. J Consult Clin Psychol 2000, 68: 864–874. 10.1037/0022-006X.68.5.864CrossRefPubMed
47.
Keller M, Henrich G: Illness-related distress: does it mean the same for men and women? Gender aspects in cancer patients' distress and adjustment. Acta Oncol 1999, 38: 747–755. 10.1080/028418699432905CrossRefPubMed
48.
Lengua LJ, Stormshak EA: Gender, Gender roles, and Personality: Gender Differences in the Prediction of Coping and Psychological Symptoms. Sex Roles 2000, 43: 787–820. 10.1023/A:1011096604861CrossRef
49.
McDonough P, Walters V: Gender and health: reassessing patterns and explanations. Soc Sci Med 2001, 52: 547–559. 10.1016/S0277-9536(00)00159-3CrossRefPubMed
50.
Northouse LL, Mood D, Templin T, Mellon S, George T: Couples' patterns of adjustment to colon cancer. Soc Sci Med 2000, 50: 271–284. 10.1016/S0277-9536(99)00281-6CrossRefPubMed
51.
Lerman C, Schwartz M: Adherence and psychological adjustment among women at high risk for breast cancer. Breast Cancer Res Treat 1993, 28: 145–155. 10.1007/BF00666427CrossRefPubMed
Metadata
Title
Colorectal Cancer in the Family: Psychosocial Distress and Social Issues in the Years Following Genetic Counselling
Authors
Eveline MA Bleiker
Fred H Menko
Irma Kluijt
Babs G Taal
Miranda A Gerritsma
Lidwina DV Wever
Neil K Aaronson
Publication date
01-12-2007
Publisher
BioMed Central
Published in
Hereditary Cancer in Clinical Practice / Issue 2/2007
Electronic ISSN: 1897-4287
DOI
https://doi.org/10.1186/1897-4287-5-2-59

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