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Hereditary Cancer in Clinical Practice
Published in: Hereditary Cancer in Clinical Practice 1/2009

Open Access 01-12-2009 | Research

Risk perception after genetic counseling in patients with increased risk of cancer

Authors: Johanna Rantala, Ulla Platten, Gunilla Lindgren, Bo Nilsson, Brita Arver, Annika Lindblom, Yvonne Brandberg

Published in: Hereditary Cancer in Clinical Practice | Issue 1/2009

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Abstract

Background

Counselees are more aware of genetics and seek information, reassurance, screening and genetic testing. Risk counseling is a key component of genetic counseling process helping patients to achieve a realistic view for their own personal risk and therefore adapt to the medical, psychological and familial implications of disease and to encourage the patient to make informed choices [1, 2].
The aim of this study was to conceptualize risk perception and anxiety about cancer in individuals attending to genetic counseling.

Methods

The questionnaire study measured risk perception and anxiety about cancer at three time points: before and one week after initial genetic counseling and one year after completed genetic investigations. Eligibility criteria were designed to include only index patients without a previous genetic consultation in the family. A total of 215 individuals were included. Data was collected during three years period.

Results

Before genetic counseling all of the unaffected participants subjectively estimated their risk as higher than their objective risk. Participants with a similar risk as the population overestimated their risk most. All risk groups estimated the risk for children's/siblings to be lower than their own. The benefits of preventive surveillance program were well understood among unaffected participants.
The difference in subjective risk perception before and directly after genetic counseling was statistically significantly lower in all risk groups. Difference in risk perception for children as well as for population was also statistically significant. Experienced anxiety about developing cancer in the unaffected subjects was lower after genetic counseling compared to baseline in all groups. Anxiety about cancer had clear correlation to perceived risk of cancer before and one year after genetic investigations.
The affected participants overestimated their children's risk as well as risk for anyone in population. Difference in risk perception for children/siblings as for the general population was significant between the first and second measurement time points. Anxiety about developing cancer again among affected participants continued to be high throughout this investigation.

Conclusion

The participant's accuracy in risk perception was poor, especially in low risk individuals before genetic counseling. There was a general trend towards more accurate estimation in all risk groups after genetic counseling. The importance of preventive programs was well understood. Cancer anxiety was prevalent and associated with risk perception, but decreased after genetic counseling.
[1] National Society of Genetic Counselors (2005), Genetic Counseling as a Profession. Available at http://​www.​nsgc.​org/​about/​definition.​cfm (accessed November 25th 2007)
[2] Julian-Reynier C., Welkenhuysen M-, Hagoel L., Decruyenaere M., Hopwood P. (2003) Risk communication strategies: state of the art and effectiveness in the context of cancer genetic services. Eur J of Human Genetics 11, 725-736.
Appendix
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Literature
1.
2.
Julian-Reynier C, Welkenhuysen M, Hagoel L, Decruyenaere M, Hopwood P: Risk communication strategies: state of the art and effectiveness in the context of cancer genetic services. Eur J Hum Genet 2003, 11: 725–736. 10.1038/sj.ejhg.5201037CrossRefPubMed
3.
Huiart L, Eisinger F, Stoppa-Lyonnet D, Lasset C, Noguès C, Vennin P, Sobol H, Julian-Reynier C: Effects of genetic consultation on perception of a family risk of breast/ovarian cancer and determinants of inaccurate perception after the consultation. J Clin Epidemiol 2002, 55: 665–675. 10.1016/S0895-4356(02)00401-8CrossRefPubMed
4.
Hopwood P, Howell A, Lalloo F, Evans G: Do women understand the odds? Risk perceptions and recall of risk information in women with a family history of breast cancer. Community Genet 2003, 6: 214–223. 10.1159/000079383PubMed
5.
Rantanen E, Hietala M, Kristoffersson U, Nippert I, Schmidtke J, Sequeiros J, Kääriäinen H: What is ideal genetic counseling? A survey of current international guidelines. Eur J Hum Genet 2008, 16: 445–452. 10.1038/sj.ejhg.5201983CrossRefPubMed
6.
Croyle RT, Lerman C: Risk communication in genetic testing for cancer susceptibility. J Natl Cancer Inst Monogr 1999, 25: 59–66.CrossRefPubMed
7.
Braithwaite D, Emery J, Walter F, Prevost AT, Sutton S: Psychological impact of genetic counseling for familial cancer: a systematic review and meta-analysis. Familial Cancer 2006, 5: 61–75. 10.1007/s10689-005-2577-1CrossRefPubMed
8.
Mikkelsen EM, Sunde L, Johansen C, Johnsen SP: Risk perception among women receiving genetic counseling: A population-based follow-up study. Cancer Detect Prev 2007, 31: 457–464. 10.1016/j.cdp.2007.10.013CrossRefPubMed
9.
Fraser LS, Bramald S, Chapman C, Chu C, Cornelius V, Douglas F, Lucassen A, Nehammer A, Sutton S, Trivella M, Hodgson S: What motives interest in attending a familial cancer genetics clinic? Fam Cancer 2003, 2: 159–168. 10.1023/B:FAME.0000004621.38109.16CrossRefPubMed
10.
Holloway S, Porteous M, Cetnarskyj R, Rush R, Appleton A, Gorman D, Campbell : Referrals of patients to colorectal cancer genetics services in south-east Scotland. Fam Cancer 2005, 4: 151–61. 10.1007/s10689-004-4488-yCrossRefPubMed
11.
Bjorvatn C, Eide GE, Hanestad BR, Øyen N, Havik OE, Carlsson A, Berglund G: Risk perception, worry and satisfaction related to genetic counseling for hereditary cancer. J Genet Couns 2007, 16(2):211–222. 10.1007/s10897-006-9061-4CrossRefPubMed
12.
Lovett E: Family studies in cancer of the colon and rectum. Br J Surg 1976, 63: 13–18. 10.1002/bjs.1800630103CrossRefPubMed
13.
St John DJ, McDermott FT, Hopper JL, Debney EA, Johnson WR, Hughes ES: Cancer risk in relatives of patients with common colorectal cancer. Ann Int Med 1993, 118: 785–790.CrossRefPubMed
14.
Itoh H, Houlston RS, Harocopos C, Slack J: Risk of cancer death in first-degree relatives of patients with hereditary nonpolyposis cancer syndrome (Lynch type II): a study of 130 kindred in the United Kingdom. Br J Surg 1990, 77: 1367–1370. 10.1002/bjs.1800771216CrossRefPubMed
15.
Fuchs CS: A prospective study of family history and the risk of colorectal cancer. N Eng J Med 1994, 331: 1669–1674. 10.1056/NEJM199412223312501CrossRef
16.
Hornsby-Lewis L: Family history increases the risk of colorectal cancer. Gastroenterology 1995, 109: 1015–1017. 10.1016/0016-5085(95)90418-2CrossRefPubMed
17.
Karner-Hanusch J, Mittlböck M, Fillipitsch T, Herbst F: Family history as a marker of risk for colon cancer: Austrian Experience. World J Surg 1997, 21: 205–209. 10.1007/s002689900217CrossRefPubMed
18.
Negri E, Braga C, La Vecchia C, Franceschi S, Filiberti R, Montella M, Falcini F, Conti E, Talamini R: Family history of cancer and risk of colorectal cancer in Italy. Br J Cancer 1998, 77: 174–179.CrossRefPubMedPubMedCentral
19.
Johns LE, Houlston RS: A systematic review and meta-analysis of familial colorectal cancer risk. Am J Gastroenterol 2001, 96: 2996–3003. 10.1111/j.1572-0241.2001.04677.xCrossRef
20.
McCaul KD, Branstetter AD, Schroeder DM, Glasgow RE: What is relationship between breast cancer risk and mammography screening? A meta-analytic review. Health Psychology 1996, 15(6):423–429. 10.1037/0278-6133.15.6.423CrossRefPubMed
21.
Brandberg Y, Arver B, Lindblom A, Sandelin K, Wickman M, Hall P: Preoperative psychological reactions and quality of life among women with an increased risk of breast cancer who are considering a prophylactic mastectomy. Eur J Cancer 2003, 40: 365–374. 10.1016/j.ejca.2003.08.026CrossRef
22.
Lerman C, Hughes C, Lemon SJ, Main D, Snyder C, Durham C, Narod S, Lynch HT: What you don't know can hurt you: adverse psychologic effects in members of BRCA1-linked and BRCA1-linked families who decline genetic testing. J Clin Oncol 1998, 16(5):1650–1654.PubMed
23.
24.
Evans DG, Blair V, Greenhalgh R, Hopwood P, Howell A: The impact of genetic counseling on risk perception in women with a family history of breast cancer. Br J Cancer 1994, 70(5):934–938.CrossRefPubMedPubMedCentral
25.
Hofferbert S, Worringen U, Backe J, Ruckert EM, White K, Faller H, Grimm T, Caffier H, Chang-Claude J, Weber BH: Simultaneous interdisciplinary counseling in German breast/ovarian cancer families: first experiences with patient perceptions, surveillance behavior and acceptance of genetic testing. Genet Couns 2000, 11(2):127–146.PubMed
26.
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(9):1736–1742. 10.1200/JCO.2004.04.138CrossRefPubMed
27.
Codori AM, Waldeck T, Petersen GM, Miglioretti D, Trimbath JD, Tillery MA: Genetic counseling outcomes: perceived risk and distress after counseling for hereditary colorectal cancer. J Genet Couns 2005, 14(2):119–132. 10.1007/s10897-005-4062-2CrossRefPubMed
28.
Nordin K, Lidén A, Hansson M, Rosenquist R, Berglund G: Coping style, psychological distress, risk perception, and satisfaction in subjects attending genetic counseling for hereditary cancer. J Med Gen 2002, 39: 689–94. 10.1136/jmg.39.9.689CrossRef
29.
Claes E, Denayer L, Evers-Kiebooms G, Boogaerts A, Philippe K, Tejpar S, Devriendt K, Legius E: Predictive testing for Hereditary Nonpolyposis Colorectal Cancer: subjective perception regarding colorectal and endometrial cancer, distress, and health-related behavior at one year post-test. Genet Test 2005, 9(1):54–65. 10.1089/gte.2005.9.54CrossRefPubMed
30.
Meiser B, Butow P, Friedlander M, Schnieden V, Gattas M, Kirk J, Suthers G, Haan E, Tucker K: Intention to undergo prophylactic bilateral mastectomy in women at increased risk of developing hereditary breast cancer. J Clin Oncol 2000, 18(23):2250–7.PubMed
31.
Sheppard R, Fry A, Rush R, Steel CM, Cull A: Women at risk of ovarian cancer: attitudes towards and expectations of the familial ovarian cancer clinic. Fam Cancer 2001, 1(1):31–37. 10.1023/A:1011539800994CrossRefPubMed
32.
Brain K, Gray J, Norman P, France E, Anglim C, Barton G, Parsons E, Clarke A, Sweetland H, Tischkowitz M, Myring J, Stansfield K, Webster D, Gower-Thomas K, Daoud R, Gateley C, Monypenny I, Singhal H, Branston L, Sampson J, Roberts E, Newcombe R, Cohen D, Rogers C, Mansel R, Harper P: Randomized trial of a specialist genetic assessment service for familial breast cancer. J Natl Cancer Inst 2000, 92(16):1345–1351. 10.1093/jnci/92.16.1345CrossRefPubMed
33.
Bish A, Sutton S, Jacobs C, Levene S, Ramirez A, Hodgson S: Changes in psychological distress after cancer genetic counseling: a comparison of affected and unaffected women. Br J Cancer 2000, 86(1):43–50. 10.1038/sj.bjc.6600030CrossRef
34.
Hopwood P, Keeling F, Long A, Pool C, Evans G, Howell A: Psychological support needs for women at high genetic risk of breast cancer: some preliminary indicators. Psycho-oncology 1998, 7(5):402–12. Publisher Full Text 10.1002/(SICI)1099-1611(1998090)7:5<402::AID-PON317>3.0.CO;2-XCrossRefPubMed
35.
MacDonald DJ, Choi J, Ferrell B, Sand S, McCaffrey S, Blazer KR, Grant M, Weitzel JN: Concerns of women presenting to a comprehensive cancer centre for genetic cancer risk assessment. J Med Gen 2002, 39: 526–30. 10.1136/jmg.39.7.526CrossRef
36.
van Dooren S, Rijnsburger AJ, Seynaeve C, Duijenvoorden HJ, Essink-Bot ML, Tilanus-Linthorst MMA, de Koning HJ, Tibben A: Psychological distress in women at increased risk for breast cancer: the role of risk perception. Eur J Cancer 2004, 40: 2056–2063. 10.1016/j.ejca.2004.05.004CrossRefPubMed
37.
Rothman AJ, Kiviniemi MT: Treating people with information: an analysis and review of approaches to communicating health risk information. J Natl Cancer Inst Monogr 1999, 25: 44–51.CrossRefPubMed
38.
Emery J, Kumar S, Smith H: Patient understanding of genetic principles and their expectations of genetic services within the NHS: a qualitative study. Community genet 1998, 1: 78–83. 10.1159/000016141CrossRefPubMed
39.
d'Agincourt-Canning L: The effect of experiential knowledge on construction of risk perception in hereditary breast/ovarian cancer. J Genet Couns 2005, 14(1):55–69. 10.1007/s10897-005-1500-0CrossRefPubMed
Metadata
Title
Risk perception after genetic counseling in patients with increased risk of cancer
Authors
Johanna Rantala
Ulla Platten
Gunilla Lindgren
Bo Nilsson
Brita Arver
Annika Lindblom
Yvonne Brandberg
Publication date
01-12-2009
Publisher
BioMed Central
Published in
Hereditary Cancer in Clinical Practice / Issue 1/2009
Electronic ISSN: 1897-4287
DOI
https://doi.org/10.1186/1897-4287-7-15

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