Smoking Cessation Health Center

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Various modes of communication (e.g., in-person, telephone, or written contact) may typically be used to disclose genetic risk information within families.[78,79,80] In one study, communication aids such as a genetic counseling summary letter or LS booklet were viewed as helpful adjuncts to the communication process but were not considered central or necessary to its success.[79] Studies have suggested that recommendations by health care providers to inform relatives about hereditary cancer risk may encourage communication about LS [80] and that support by health care professionals may be helpful in overcoming barriers to communicating such information to family members.[82]

References:

1. Croyle RT, Lerman C: Interest in genetic testing for colon cancer susceptibility: cognitive and emotional correlates. Prev Med 22 (2): 284-92, 1993.
2. Smith KR, Croyle RT: Attitudes toward genetic testing for colon cancer risk. Am J Public Health 85 (10): 1435-8, 1995.
3. Graham ID, Logan DM, Hughes-Benzie R, et al.: How interested is the public in genetic testing for colon cancer susceptibility? Report of a cross-sectional population survey. Cancer Prev Control 2 (4): 167-72, 1998.
4. Bunn JY, Bosompra K, Ashikaga T, et al.: Factors influencing intention to obtain a genetic test for colon cancer risk: a population-based study. Prev Med 34 (6): 567-77, 2002.
5. Meiser B, Dunn S: Psychological impact of genetic testing for Huntington's disease: an update of the literature. J Neurol Neurosurg Psychiatry 69 (5): 574-8, 2000.
6. Lerman C, Shields AE: Genetic testing for cancer susceptibility: the promise and the pitfalls. Nat Rev Cancer 4 (3): 235-41, 2004.
7. Petersen GM, Larkin E, Codori AM, et al.: Attitudes toward colon cancer gene testing: survey of relatives of colon cancer patients. Cancer Epidemiol Biomarkers Prev 8 (4 Pt 2): 337-44, 1999.
8. Glanz K, Grove J, Lerman C, et al.: Correlates of intentions to obtain genetic counseling and colorectal cancer gene testing among at-risk relatives from three ethnic groups. Cancer Epidemiol Biomarkers Prev 8 (4 Pt 2): 329-36, 1999.
9. Ramsey SD, Wilson S, Spencer A, et al.: Attitudes towards genetic screening for predisposition to colon cancer among cancer patients, their relatives and members of the community. Results of focus group interviews. Community Genet 6 (1): 29-36, 2003.
10. Keller M, Jost R, Kadmon M, et al.: Acceptance of and attitude toward genetic testing for hereditary nonpolyposis colorectal cancer: a comparison of participants and nonparticipants in genetic counseling. Dis Colon Rectum 47 (2): 153-62, 2004.
11. Lerman C, Marshall J, Audrain J, et al.: Genetic testing for colon cancer susceptibility: Anticipated reactions of patients and challenges to providers. Int J Cancer 69 (1): 58-61, 1996.
12. Kinney AY, Choi YA, DeVellis B, et al.: Attitudes toward genetic testing in patients with colorectal cancer. Cancer Pract 8 (4): 178-86, 2000 Jul-Aug.
13. Kinney AY, Choi YA, DeVellis B, et al.: Interest in genetic testing among first-degree relatives of colorectal cancer patients. Am J Prev Med 18 (3): 249-52, 2000.
14. Kinney AY, DeVellis BM, Skrzynia C, et al.: Genetic testing for colorectal carcinoma susceptibility: focus group responses of individuals with colorectal carcinoma and first-degree relatives. Cancer 91 (1): 57-65, 2001.
15. Keller M, Jost R, Haunstetter CM, et al.: Comprehensive genetic counseling for families at risk for HNPCC: impact on distress and perceptions. Genet Test 6 (4): 291-302, 2002.
16. Shiloh S, Koehly L, Jenkins J, et al.: Monitoring coping style moderates emotional reactions to genetic testing for hereditary nonpolyposis colorectal cancer: a longitudinal study. Psychooncology 17 (8): 746-55, 2008.
17. Points to consider: ethical, legal, and psychosocial implications of genetic testing in children and adolescents. American Society of Human Genetics Board of Directors, American College of Medical Genetics Board of Directors. Am J Hum Genet 57 (5): 1233-41, 1995.
18. Reliability of presymptomatic test for adenomatous polyposis coli. Lancet 337 (8750): 1171-2, 1991.
19. Whitelaw S, Northover JM, Hodgson SV: Attitudes to predictive DNA testing in familial adenomatous polyposis. J Med Genet 33 (7): 540-3, 1996.
20. Douma KF, Aaronson NK, Vasen HF, et al.: Attitudes toward genetic testing in childhood and reproductive decision-making for familial adenomatous polyposis. Eur J Hum Genet 18 (2): 186-93, 2010.
21. Levine FR, Coxworth JE, Stevenson DA, et al.: Parental attitudes, beliefs, and perceptions about genetic testing for FAP and colorectal cancer surveillance in minors. J Genet Couns 19 (3): 269-79, 2010.
22. Cunniff C; American Academy of Pediatrics Committee on Genetics.: Prenatal screening and diagnosis for pediatricians. Pediatrics 114 (3): 889-94, 2004.
23. Rappaport VJ: Prenatal diagnosis and genetic screening--integration into prenatal care. Obstet Gynecol Clin North Am 35 (3): 435-58, ix, 2008.
24. Eddleman KA, Malone FD, Sullivan L, et al.: Pregnancy loss rates after midtrimester amniocentesis. Obstet Gynecol 108 (5): 1067-72, 2006.
25. Baruch S, Kaufman D, Hudson KL: Genetic testing of embryos: practices and perspectives of US in vitro fertilization clinics. Fertil Steril 89 (5): 1053-8, 2008.
26. Ogilvie CM, Braude PR, Scriven PN: Preimplantation genetic diagnosis--an overview. J Histochem Cytochem 53 (3): 255-60, 2005.
27. Kastrinos F, Stoffel EM, Balma�a J, et al.: Attitudes toward prenatal genetic testing in patients with familial adenomatous polyposis. Am J Gastroenterol 102 (6): 1284-90, 2007.
28. Simpson JL, Carson SA, Cisneros P: Preimplantation genetic diagnosis (PGD) for heritable neoplasia. J Natl Cancer Inst Monogr (34): 87-90, 2005.
29. Burn J, Chapman P, Delhanty J, et al.: The UK Northern region genetic register for familial adenomatous polyposis coli: use of age of onset, congenital hypertrophy of the retinal pigment epithelium, and DNA markers in risk calculations. J Med Genet 28 (5): 289-96, 1991.
30. Codori AM, Petersen GM, Miglioretti DL, et al.: Attitudes toward colon cancer gene testing: factors predicting test uptake. Cancer Epidemiol Biomarkers Prev 8 (4 Pt 2): 345-51, 1999.
31. Lerman C, Hughes C, Trock BJ, et al.: Genetic testing in families with hereditary nonpolyposis colon cancer. JAMA 281 (17): 1618-22, 1999.
32. Lynch HT, Lemon SJ, Karr B, et al.: Etiology, natural history, management and molecular genetics of hereditary nonpolyposis colorectal cancer (Lynch syndromes): genetic counseling implications. Cancer Epidemiol Biomarkers Prev 6 (12): 987-91, 1997.
33. Vernon SW, Gritz ER, Peterson SK, et al.: Intention to learn results of genetic testing for hereditary colon cancer. Cancer Epidemiol Biomarkers Prev 8 (4 Pt 2): 353-60, 1999.
34. Aktan-Collan K, Mecklin JP, J�rvinen H, et al.: Predictive genetic testing for hereditary non-polyposis colorectal cancer: uptake and long-term satisfaction. Int J Cancer 89 (1): 44-50, 2000.
35. Loader S, Shields C, Levenkron JC, et al.: Patient vs. physician as the target of educational outreach about screening for an inherited susceptibility to colorectal cancer. Genet Test 6 (4): 281-90, 2002.
36. Hadley DW, Jenkins J, Dimond E, et al.: Genetic counseling and testing in families with hereditary nonpolyposis colorectal cancer. Arch Intern Med 163 (5): 573-82, 2003.
37. Johnson KA, Rosenblum-Vos L, Petersen GM, et al.: Response to genetic counseling and testing for the APC I1307K mutation. Am J Med Genet 91 (3): 207-11, 2000.
38. Petersen GM, Boyd PA: Gene tests and counseling for colorectal cancer risk: lessons from familial polyposis. J Natl Cancer Inst Monogr (17): 67-71, 1995.
39. Esplen MJ, Madlensky L, Aronson M, et al.: Colorectal cancer survivors undergoing genetic testing for hereditary non-polyposis colorectal cancer: motivational factors and psychosocial functioning. Clin Genet 72 (5): 394-401, 2007.
40. Manne SL, Chung DC, Weinberg DS, et al.: Knowledge and attitudes about microsatellite instability testing among high-risk individuals diagnosed with colorectal cancer. Cancer Epidemiol Biomarkers Prev 16 (10): 2110-7, 2007.
41. Wakefield CE, Meiser B, Homewood J, et al.: Randomized trial of a decision aid for individuals considering genetic testing for hereditary nonpolyposis colorectal cancer risk. Cancer 113 (5): 956-65, 2008.
42. Manne SL, Meropol NJ, Weinberg DS, et al.: Facilitating informed decisions regarding microsatellite instability testing among high-risk individuals diagnosed with colorectal cancer. J Clin Oncol 28 (8): 1366-72, 2010.
43. Bapat B, Noorani H, Cohen Z, et al.: Cost comparison of predictive genetic testing versus conventional clinical screening for familial adenomatous polyposis. Gut 44 (5): 698-703, 1999.
44. Dudok deWit AC, Duivenvoorden HJ, Passchier J, et al.: Course of distress experienced by persons at risk for an autosomal dominant inheritable disorder participating in a predictive testing program: an explorative study. Rotterdam/Leiden Genetics Workgroup. Psychosom Med 60 (5): 543-9, 1998 Sep-Oct.
45. Collins VR, Meiser B, Ukoumunne OC, et al.: The impact of predictive genetic testing for hereditary nonpolyposis colorectal cancer: three years after testing. Genet Med 9 (5): 290-7, 2007.
46. Meiser B, Collins V, Warren R, et al.: Psychological impact of genetic testing for hereditary non-polyposis colorectal cancer. Clin Genet 66 (6): 502-11, 2004.
47. Aktan-Collan K, Haukkala A, Mecklin JP, et al.: Psychological consequences of predictive genetic testing for hereditary non-polyposis colorectal cancer (HNPCC): a prospective follow-up study. Int J Cancer 93 (4): 608-11, 2001.
48. Claes E, Denayer L, Evers-Kiebooms G, et al.: 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 9 (1): 54-65, 2005.
49. Vernon SW, Gritz ER, Peterson SK, et al.: Correlates of psychologic distress in colorectal cancer patients undergoing genetic testing for hereditary colon cancer. Health Psychol 16 (1): 73-86, 1997.
50. Gritz ER, Vernon SW, Peterson SK, et al.: Distress in the cancer patient and its association with genetic testing and counseling for hereditary non-polyposis colon cancer. Cancer Research, Therapy and Control 8(1-2): 35-49, 1999.
51. Esplen MJ, Urquhart C, Butler K, et al.: The experience of loss and anticipation of distress in colorectal cancer patients undergoing genetic testing. J Psychosom Res 55 (5): 427-35, 2003.
52. Gritz ER, Peterson SK, Vernon SW, et al.: Psychological impact of genetic testing for hereditary nonpolyposis colorectal cancer. J Clin Oncol 23 (9): 1902-10, 2005.
53. Murakami Y, Okamura H, Sugano K, et al.: Psychologic distress after disclosure of genetic test results regarding hereditary nonpolyposis colorectal carcinoma. Cancer 101 (2): 395-403, 2004.
54. Keller M, Jost R, Haunstetter CM, et al.: Psychosocial outcome following genetic risk counselling for familial colorectal cancer. A comparison of affected patients and family members. Clin Genet 74 (5): 414-24, 2008.
55. Wagner A, van Kessel I, Kriege MG, et al.: Long term follow-up of HNPCC gene mutation carriers: compliance with screening and satisfaction with counseling and screening procedures. Fam Cancer 4 (4): 295-300, 2005.
56. van Oostrom I, Meijers-Heijboer H, Duivenvoorden HJ, et al.: Experience of parental cancer in childhood is a risk factor for psychological distress during genetic cancer susceptibility testing. Ann Oncol 17 (7): 1090-5, 2006.
57. Patenaude AF: Genetic Testing for Cancer: Psychological Approaches for Helping Patients and Families. Washington, DC: American Psychological Association, 2005.
58. Michie S, Bobrow M, Marteau TM: Predictive genetic testing in children and adults: a study of emotional impact. J Med Genet 38 (8): 519-26, 2001.
59. Michie S, Weinman J, Miller J, et al.: Predictive genetic testing: high risk expectations in the face of low risk information. J Behav Med 25 (1): 33-50, 2002.
60. Andrews L, Mireskandari S, Jessen J, et al.: Impact of familial adenomatous polyposis on young adults: attitudes toward genetic testing, support, and information needs. Genet Med 8 (11): 697-703, 2006.
61. Codori AM, Petersen GM, Boyd PA, et al.: Genetic testing for cancer in children. Short-term psychological effect. Arch Pediatr Adolesc Med 150 (11): 1131-8, 1996.
62. Codori AM, Zawacki KL, Petersen GM, et al.: Genetic testing for hereditary colorectal cancer in children: long-term psychological effects. Am J Med Genet 116A (2): 117-28, 2003.
63. Hadley DW, Jenkins JF, Dimond E, et al.: Colon cancer screening practices after genetic counseling and testing for hereditary nonpolyposis colorectal cancer. J Clin Oncol 22 (1): 39-44, 2004.
64. Halbert CH, Lynch H, Lynch J, et al.: Colon cancer screening practices following genetic testing for hereditary nonpolyposis colon cancer (HNPCC) mutations. Arch Intern Med 164 (17): 1881-7, 2004.
65. Collins V, Meiser B, Gaff C, et al.: Screening and preventive behaviors one year after predictive genetic testing for hereditary nonpolyposis colorectal carcinoma. Cancer 104 (2): 273-81, 2005.
66. Stoffel EM, Garber JE, Grover S, et al.: Cancer surveillance is often inadequate in people at high risk for colorectal cancer. J Med Genet 40 (5): e54, 2003.
67. Bleiker EM, Menko FH, Taal BG, et al.: Screening behavior of individuals at high risk for colorectal cancer. Gastroenterology 128 (2): 280-7, 2005.
68. Yang K, Allen B, Conrad P, et al.: Awareness of gynecologic surveillance in women from hereditary non-polyposis colorectal cancer families. Fam Cancer 5 (4): 405-9, 2006.
69. Kinney AY, Hicken B, Simonsen SE, et al.: Colorectal cancer surveillance behaviors among members of typical and attenuated FAP families. Am J Gastroenterol 102 (1): 153-62, 2007.
70. Eu KW, Lim SL, Seow-Choen F, et al.: Clinical outcome and bowel function following total abdominal colectomy and ileorectal anastomosis in the Oriental population. Dis Colon Rectum 41 (2): 215-8, 1998.
71. Van Duijvendijk P, Slors JF, Taat CW, et al.: Quality of life after total colectomy with ileorectal anastomosis or proctocolectomy and ileal pouch-anal anastomosis for familial adenomatous polyposis. Br J Surg 87 (5): 590-6, 2000.
72. Church JM: Prophylactic colectomy in patients with hereditary nonpolyposis colorectal cancer. Ann Med 28 (6): 479-82, 1996.
73. Andrews L, Mireskandari S, Jessen J, et al.: Impact of familial adenomatous polyposis on young adults: quality of life outcomes. Dis Colon Rectum 50 (9): 1306-15, 2007.
74. Lim JF, Ho YH: Total colectomy with ileorectal anastomosis leads to appreciable loss in quality of life irrespective of primary diagnosis. Tech Coloproctol 5 (2): 79-83, 2001.
75. Hawk E, Lubet R, Limburg P: Chemoprevention in hereditary colorectal cancer syndromes. Cancer 86 (11 Suppl): 2551-63, 1999.
76. Celecoxib trials under Way J Natl Cancer Inst 92 (4): 299A-299, 2000.
77. Miller HH, Bauman LJ, Friedman DR, et al.: Psychosocial adjustment of familial polyposis patients and participation in a chemoprevention trial. Int J Psychiatry Med 16 (3): 211-30, 1986-87.
78. Peterson SK, Watts BG, Koehly LM, et al.: How families communicate about HNPCC genetic testing: findings from a qualitative study. Am J Med Genet C Semin Med Genet 119 (1): 78-86, 2003.
79. Gaff CL, Collins V, Symes T, et al.: Facilitating family communication about predictive genetic testing: probands' perceptions. J Genet Couns 14 (2): 133-40, 2005.
80. Mesters I, Ausems M, Eichhorn S, et al.: Informing one's family about genetic testing for hereditary non-polyposis colorectal cancer (HNPCC): a retrospective exploratory study. Fam Cancer 4 (2): 163-7, 2005.
81. Stoffel EM, Ford B, Mercado RC, et al.: Sharing genetic test results in Lynch syndrome: communication with close and distant relatives. Clin Gastroenterol Hepatol 6 (3): 333-8, 2008.
82. Pentz RD, Peterson SK, Watts B, et al.: Hereditary nonpolyposis colorectal cancer family members' perceptions about the duty to inform and health professionals' role in disseminating genetic information. Genet Test 9 (3): 261-8, 2005.
83. Koehly LM, Peterson SK, Watts BG, et al.: A social network analysis of communication about hereditary nonpolyposis colorectal cancer genetic testing and family functioning. Cancer Epidemiol Biomarkers Prev 12 (4): 304-13, 2003.