The process of deciding about prophylactic surgery for breast and ovarian cancer: Patient questions, uncertainties, and communication

American Journal of Medical Genetics, Part A

Volumn 152, Issue 1, 2010, Pages 52-66

  Klitzman, Robert ^a   Chung, Wendy ^b,c  

^a Columbia University ^*  (United States)

^b Och Spine at New York Presbyterian Hospitals   (United States)

^c NONE

Author keywords

Decision making; Doctor patient communication; Doctor patient relationship; Qualitative research; ethics; Risk and benefits

Indexed keywords

BRCA1 PROTEIN; BRCA2 PROTEIN;

ADULT; AGED; ARTICLE; BREAST CANCER; CANCER PREVENTION; CANCER RISK; CANCER SURGERY; CLINICAL ARTICLE; DOCTOR PATIENT RELATION; FAMILY; FEMALE; GENE MUTATION; GENETIC COUNSELING; GENETIC RISK; HUMAN; INTERPERSONAL COMMUNICATION; INTERVIEW; LIFE STRESS; MASTECTOMY; MEDICAL DECISION MAKING; ONCOGENE; OVARY CANCER; PATIENT ASSESSMENT; PATIENT ATTITUDE; PATIENT PARTICIPATION; PHYSICIAN ATTITUDE; PRIORITY JOURNAL; PROGNOSIS; RISK ASSESSMENT; SALPINGOOOPHORECTOMY; SELF CONCEPT; UNCERTAINTY; COMMUNITY CARE; DECISION MAKING; DEMOGRAPHY; FAMILY HISTORY; GENETIC SCREENING; MARRIAGE; OVARIECTOMY; PARTIAL MASTECTOMY; RISK FACTOR; SOCIAL SUPPORT;

ADULT; AGED; BREAST NEOPLASMS; DECISION MAKING; FEMALE; GENES, BRCA1; GENES, BRCA2; HUMANS; MIDDLE AGED; MUTATION; OVARIAN NEOPLASMS; PHYSICIAN-PATIENT RELATIONS; SURGICAL PROCEDURES, ELECTIVE; UNCERTAINTY;

EID: 75149164358     PISSN: 15524825     EISSN: 15524833     Source Type: Journal    
DOI: 10.1002/ajmg.a.33068     Document Type: Article

References (56)

1. American Board of Genetic Counseling. 2008. http://www.abgc.net/english/ View.asp?x=1607 (Accessed June 16, 2008).
2. Anderson K, Jacobson JS, Heitjan DF, Graff Zivin J, Hershman D, Neugut AI, Grann VR. 2006. Cost-effectiveness of preventive strategies for women with BRCA1 or BRCA2 mutation. Ann Intern Med 144:397-406.
3. Antill Y, Reynolds J, Young M, Kirk J, Tucker K, Bogtstra T, Wong S, Dudding T, Di Iulio J, Phillips K. 2006. Risk-reducing surgery in women with family susceptibility for breast and/or ovarian cancer. Eur J Cancer 42:621-628.
4. Baars MJH, Henneman L, ten Kate LP. 2005. Deficiency of knowledge of genetics and genetic tests among general practitioners, gynecologists, and pediatricians: A global problem. Genet Med 7:605-610.
5. Barker KK. 2008. Electronic support groups, patient-consumers, and medicalization: The case of contested illness. J Health Soc Behav 49:20-36.
6. Barrison AF, Smith C, Oviedo J, Heeren T, Schroy PC III. 2003. Colorectal cancer screening and familial risk: A survey of internal medicine residents' knowledge and practice patterns. Am J Gastroenterol 7:605-610.
7. Bermejo-Perez MJ, Marquez-Calderon S, Llanos-Mendez A. 2007. Effectiveness of preventive interventions in BRCA 1/2 gene mutation carriers: A systematic review. Int J Cancer 121:225-231.
8. Botkin JR, Smith KR, Croyle RT, Baty BJ, Wylie JE, Dutson D, Chan A, Hamann HA, Lerman C, McDonald J, Venne V, Ward JH, Lyon E. 2003. Genetic testing for a BRCA 1 mutation: Prophylactic surgery and screening behavior in women 2 years post testing. Am J Med Genet Part A 118A:201-209.
9. Bradbury AR, Ibe CN, Dignam JJ, Cummings SA, Verp M, White MA, Artioli G, Dudlicek L, Olopade OI. 2008. Uptake and timing of bilateral prophylactic salpingo-oophorectomy among BRCA 1 and BRCA 2 mutation carriers. Genet Med 10:161-166.
10. Burke S, Stone A, Bedward J, Thomas H, Farridon P. 2006. A "neglected part of the curriculum" or "of limited use"? Views on genetics training by nongenetics medical trainees and implications for delivery. Genet Med 8:109-115.
11. Chase GA, Geller G, Havstad SL, Holtzman NA, Bassett SS. 2002. Physicians' propensity to offer genetic testing for Alzheimer's disease: Results from a survey. Genet Med 4:297-303.
12. Coulson NS, Buchanan H, Aubeeluck A. 2007. Social support in cyberspace: A content analysis of communication within a Huntington's disease on-line support group. Patient Educ Couns 68:173-178.
13. Cox SM, McKellin W. 1999. "There's this thing in our family": Predictive testing and the construction of risk for Huntington disease. Sociol Health Illn 21:622-646.
14. Freedman AN, Wideroff L, Olson L, Davis W, Klabunde C, Srinath KP, Reeve BB, Croyle RT, Ballard-Barbash R. 2003. US physicians' attitudes toward genetic testing for cancer susceptibility. Am J Med Genet Part A 120A:63-71.
15. Geertz C. 1973. Interpretation of cultures: Selected essays. New York: Basic Books. 470 pp.
16. Geller G, Tambor ES, Chase GA, Holtzman NA. 1993. "Measuring physicians' tolerance for ambiguity and its relationship to their reported practices regarding genetic testing". Med Care 31:989-1001.
17. Gifford SM. 1986. The meanings of lumps: A case study of the ambiguities of risk. In: James CR, Stall R, Gifford SM, editors. Anthropology and epidemiology. Holland: D. Reidel Publishing Comp. p 213-246.
18. Graves KD, Peshkin BN, Halbert CH, DeMarco TA, Isaacs C, Schwartz MD. 2007. Predictors and outcomes of contralateral prophylactic mastectomy among breast cancer survivors. Breast Cancer Res Treat 104:321-329.
19. Guest G, Bunce A, Johnson L. 2006. How many interviews are enough? An experiment with data saturation and variability. Field Methods 18:59-82.
20. Hallowell N, Jacobs I, Richards M, Mackay J, Gore M. 2001. Surveillance or surgery? A description of the factors that influence high risk premenopausal women's decisions about prophylactic oophorectomy. J Med Genet 1:683-726.
21. Helmes AW. 2002. Application of the protection motivation theory to genetic testing for breast cancer risk. Prev Med 35:453-462.
22. Houn F, Helzlsouer KJ, Friedman NB, Stefanek ME. 1995. The Practice of prophylactic mastectomy: A survey of Maryland surgeons. Am J Public Health 85:801-805.
23. Julian-Reynier C, Eisinger F, Moatti JP, Sobol H. 2000. Physicians' attitudes towards mammography and prophylactic surgery for hereditary breast/ovarian cancer risk and subsequently published guidelines. Eur J Hum Genet 8:204-208.
24. Kaufman EM, Peshkin BN, Lawrence WF, Shelby R, Isaacs C, Brown K, Rispoli J,O'Neill S, Hurley K, DeMarco T, Brogan B, Grumet S, Jandorf L, McKenna K, Valdimarsdottir H, Schwartz MD. 2003. Development of an interactive decision aid for female BRCA 1/BRCA 2 carriers. J Genet Carriers 12:109-129.
25. Kaut KP. 2006. Counseling psychology in the era of genetic testing: Considerations for practice, research, and training. Counseling Psychologist 34:461-488.
26. Kinney AY, Simonsen SE, Baty BJ, Mandal D, Neuhausen SL, Seggar K, Rolubkov R, Bloor L, Smith K. 2006. Risk reduction behaviors and provider communication following genetic counseling and BRCA 1 mutation testing in an African American Kindred. J Genet Couns 15:293-305.
27. Klitzman R. 2008. When doctors become patients. New York: Oxford University Press. 333 pp.
28. Klitzman R, Thorne D, Williamson J, Chung W, Marder K. 2007a. Decision -making about reproductive choices among individuals at-risk for Huntington's Disease. J Genet Couns 16:347-362.
29. Klitzman R, Thorne D, Williamson J, Marder K. 2007b. The roles of family members, health care workers and others in decision-making processes about genetic testing among individuals at risk for Huntington's Disease. Genet Med 9:358-371.
30. Klitzman R, Thorne D, Williamson J, Chung W, Marder K. 2007c. Disclosures of Huntington's Disease risk within families: Patterns of decision-making and implications. Am J Med Genet Part A 143A: 1835-1849.
31. Klitzman R, Albala I, Siragusa J, Appelbaum P. 2008. Disclosure of information to potential subjects on research recruitment websites. IRB 30:15-20.
32. Klitzman R, Zolovska B, Folberth W, Chung W, Sauer M, Appelbaum P. 2009. Presentations on IVF clinic websites of information on preimplantation genetic diagnosis: Ethics, risks and benefits. Fertil Steril 92:1276-1283.
33. Kram V, Peretz T, Sagi M. 2006. Acceptance of preventive surgeries by Israeli women who had undergone BRCA testing.FamCancer 5:327-335.
34. Lerman C, Hughes C, Croyle RT, Main D, Durham C, Snyder C, Bonney A, Lynch JF, Narod SA, Lynch HT. 2000. Prophylactic surgery decisions and surveillance practices one year following BRCA 1/2 testing. Prev Med 31:75-80.
35. Lobb EA, Butow PN, Moore A, Barratt A, Tucker K, Gaff C, Kirk J, Dudding T, Butt D. 2006. Development of a communication aid to facilitate risk communication in consultations with unaffected women from high risk breast cancer families: A pilot study. J Genet Couns 15:393-405.
36. Madalinksa JB, van Beurden M, Bleiker EMA, Valdimarsdottir HB, Lubsen -Brandsma L, Massuger LF, Mourits MJE, Gaarenstroom KN, van Dorst EBL, van der Putten H, Boonstra H, Aaronson NK. 2007. Predictors of prophylactic bilateral salpingo-oophorectomy compared with gynecologic screening use in BRCA 1/2 mutation carriers. J Clin Oncol 25:301-307.
37. Meijers-Heijboer EJ, Verhoog LC, Brekelmans CTM, Seynaeve C, Tilanus-Linthorst MMA, Wagner A, Dukel L, Devilee P, van den Ouweland AMW, van Geel AN, Klijn JGM. 2000. Presymptomatic DNA testing and prophylactic surgery in families with a BRCA 1 or BRCA2 mutation. Lancet 355:2015-2020.
38. Meiser B, Tiller K, GleesonMA,Andrews L, Robertson G, TuckerKM.2000. Psychological impact of prophylactic oophorectomy in women at increased risk for ovarian cancer. Psycho-Oncology 9:496-503.
39. Metcalfe KA, Snyder C, Seidel J, Hanna D, Lynch HT, Narod S. 2005. The use of preventive measures among healthy women who carry a BRCA1 or BRCA2 mutation. Fam Cancer 4:97-103.
40. Metcalfe KA, Ghadirian P, Rosen B, Foulkes W, Kim-Sing C, Eisen A, Ainsworth P, Horsman D, Maugard C, Provencher D, Robideaux A, Gilchrist D, Chudley A, Lemire EG, Armel S, Finch A, Ping S, Narod SA. 2007. Variation in rates of uptake of preventive options by Canadian women carrying the BRCA1 or BRCA2 genetic mutation. Open Med 1:92-98.
41. Metcalfe KA, Birenbaum-Carmeli D, Lubinski J, Gronwald J, Lynch H, Moller P, Ghardirian P, Foulkes WD, Klijn J, Friedman E, Kim-Sing C, Ainsworth P, Rosen B, Domchek S, Wagner T, Tung N, Manoukian S, Couch F, Sun P, Narod SA, The Hereditary Breast Cancer Clinical Study Group. 2008a. International variation in rates of uptake of preventive options in BRCA 1 and BRCA2 mutation carriers. Int J Cancer 122:2017-2022.
42. Metcalfe KA, Lubinkski J, Ghadirian P, Lynch H, Kim-Sing C, Friedman E, Foulkes WD, Domchek S, Ainsworth P, Isaacs C, Tung N, Gronwald J, Cummings S, Wagner T, Manoukian S, Møller P, Weitzel J, Sun P, Narod SA. 2008b. Predictors of contralateral prophylactic mastectomy in women with BRCA1 or BRCA2 mutation: The hereditary breast cancer clinical study group. J Clin Oncol 26:1093-1097. 10.1200/JCO32007.12.6078.
43. Miller SM, Roussi P, Daly MB, Buzaglo JS, Sherman K, Godwin A, Balshem A, Atchison ME. 2005. Enhanced counseling for women undergoing BRCA 1/2 testing: Impact on subsequent decision making about risk reduction behaviors. Health Educ Behav 32:654-667.
44. Payne DK, Biggs C, Tran KN, Borgen PI, Massie MJ. 2000. Women's regrets after bilateral prophylatic mastectomy. Ann Surg Oncol 7: 150-154.
45. Prochaska JO, DiClemente CC, Norcross JC. 1992. In search of how people change: Applications to addictive behaviors. Am Psychol 47:1102-1114.
46. Radin P. 2006. "To me, it's my life": Medical communication, trust, and activism in cyberspace. Soc Sci Med 62:591-601.
47. Ray JA, Loescher LJ, Brewer M. 2005. Risk-reduction surgery decisions in high-risk women seen for genetic counseling. J Genet Couns 14:473-484.
48. Rosenstock IM, Strecher VJ, Becker MH. 1988. Social learning theory and the health belief model. Health Educ Q 15:175-183.
49. Schroy PC, Barrison AF, Ling BS, Wilson S, Geller AC. 2002. Family history and colorectal cancer screening: A survey of physician knowledge and practice patterns. Am J Gastroenterol 97:1031-1036.
50. Schwartz MD, Kaufman E, Peshkin BN, Isaacs C, Hughes C, DeMarco T, Finch C, Lerman C. 2003. Bilateral prophylactic oophorectomy and ovarian cancer screening following BRCA1/BRCA2 mutation testing. J Clin Oncol 21:4034-4041.
51. Shaw BR, Hawkins R, Arora N, McTavish F, Pingree S, Gustafson DH. 2006. An exploratory study of predictors of participation in a computer support group for women with breast cancer. Comput Inform Nursing 24:18-27.
52. Strauss A, Corbin J. 1990. Basics of qualitative research - Techniques and procedures for developing grounded theory. Newbury Park: Sage Publications. 323 pp.
53. Suther Menasha JD, Schechter C, Willner J. 2000. Genetic testing: A physician's perspective. Mt Sinai J Med 67:144-151.
54. Tiller K, Meiser B, Butow P, Clifton M, Thewes B, Friedlander M, Tucker K. 2002. Psychological impact of prophylactic oophorectomy in women at increased risk of developing ovarian cancer:Aprospective study. Gynecol Oncol 86:212-219.
55. Tubbs EP, Broeckel Elrod J, Flum DR. 2006. Risk taking and tolerance of uncertainty: Implications for surgeons. J Surg Res 131:1-6.
56. van Dijk S, Otten W, Zoeteweij MW, Timmermans DRM, van Asperen CJ, Breuning MH, Tollenaar RAEM, Kievit J. 2003. Genetic counseling and the intention to undergo prophylactic mastectomy: Effects of a breast cancer risk assessment. Br J Cancer 88:1675-1681.