Differences between women who pursued genetic testing for hereditary breast and ovarian cancer and their at-risk relatives who did not

Oncology Nursing Forum

Volumn 38, Issue 5, 2011, Pages 572-581

  Katapodi, Maria C ^a   Northouse, Laurel ^a   Pierce, Penny ^b   Milliron, Kara J ^a   Liu, Guipeng ^c   Merajver, Sofia D ^a  

^a UNIVERSITY OF MICHIGAN   (United States)

^b UNIFORMED SERVICES UNIVERSITY OF THE HEALTH SCIENCES   (United States)

^c UNIVERSITY OF MICHIGAN HEALTH SYSTEM   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 80052310510     PISSN: 0190535X     EISSN: 15380688     Source Type: Journal    
DOI: 10.1188/11.ONF.572-581     Document Type: Article

References (60)

1. American Cancer Society. (2011). Cancer facts and figures 2011. Retrieved from http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/ documents/document/acspc-029771.pdf.
2. Anagnostopoulos, F., & Spanea, E. (2005). Assessing illness representations of breast cancer: A comparison of patients with healthy and benign controls. Journal of Psychosomatic Research, 58, 327-334. doi: 10.1016/j.jpsychores.2004.09.011. (Pubitemid 40910003)
3. Berry, D.A., Iversen, E.S., Jr., Gudbjartsson, D.F., Hiller, E.H., Garber, J.E., Peshkin, B.N., . . . Parmigiani, G. (2002). BRCAPRO validation, sensitivity of genetic testing of BRCA1/BRCA2, and prevalence of other breast cancer susceptibility genes. Journal of Clinical Oncology, 20, 2701-2712. doi:10.1200/JCO.2002.05.121. (Pubitemid 34575644)
4. Biesecker, B.B., Ishibe, N., Hadley, D.W., Giambarresi, T.R., Kase, R.G., Lerman, C., & Struewing, J.P. (2000). Psychosocial factors predicting BRCA1/BRCA2 testing decisions in members of hereditary breast and ovarian cancer families. American Journal of Medical Genetics, 93, 257-263. (Pubitemid 30497442)
5. Blandy, C., Chabal, F., Stoppa-Lyonnet, D., & Julian-Reynier, C. (2003). Testing participation in BRCA1/2-positive families: Initiator role of index cases. Genetic Testing, 7, 225-233. (Pubitemid 37363082)
6. Cameron, L.D., & Muller, C. (2009). Psychosocial aspects of genetic testing. Current Opinion in Psychiatry, 22, 218-223.
7. 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, 116A, 11-19. doi:10.1002/ajmg.a.10868. (Pubitemid 36008062)
8. Claes, E., Evers-Kiebooms, G., Denayer, L., Decruyenaere, M., Boogaerts, A., Philippe, K., & Leguis, E. (2005). Predictive genetic testing for hereditary breast and ovarian cancer: Psychological distress and illness representations 1 year following disclosure. Journal of Genetic Counseling, 14, 349-363. doi:10.1007/s10897-005-1371-4. (Pubitemid 41407042)
9. Couch, F.J., DeShano, M.L., Blackwood, M.A., Calzone, K., Stopfer, J., Campeau, L., . . . Weber, B.L. (1997). BRCA1 mutations in women attending clinics that evaluate the risk of breast cancer. New England Journal of Medicine, 336, 1409-1415. doi:10.1056/NEJM199705153362002. (Pubitemid 27208599)
10. Crotser, C.B., & Boehmke, M. (2009). Survivorship considerations in adults with hereditary breast and ovarian cancer syndrome: State of the science. Journal of Cancer Survivorship, 3, 21-42. doi:10.1007/s11764-008-0077-7.
11. d'Agincourt-Canning, L. (2005). The effect of experiential knowledge on construction of risk perception in hereditary breast/ovarian cancer. Journal of Genetic Counseling, 14(1), 55-69. (Pubitemid 40543822)
12. Eisinger, F., Charafe-Jauffret, E., Jacquemier, J., Birnbaum, D., Julian-Reynier, C., & Sobol, H. (2001). Tamoxifen and breast cancer risk in women harboring a BRCA1 germline mutation: Computed efficacy, effectiveness and impact. International Journal of Oncology, 18(1), 5-10.
13. Finch, A., Beiner, M., Lubinski, J., Lynch, H.T., Moller, P., Rosen, B., . . . Narod, S.A. (2006). Salpingo-oophorectomy and the risk of ovarian, fallopian tube, and peritoneal cancers in women with a BRCA1 or BRCA2 mutation. JAMA, 296, 185-192. doi:10.1001/jama.296.2.185. (Pubitemid 44050372)
14. Frank, T.S. (1999). Testing for hereditary risk for ovarian cancer. Cancer Control, 6, 327-334.
15. Futreal, P.A., Liu, Q., Shattuck-Eidens, D., Cochran, C., Harshman, K., Tavtigian, S., . . . Miki, Y. (1994). BRCA1 mutations in primary breast and ovarian carcinomas. Science, 266, 120-122. (Pubitemid 24345332)
16. Geller, G., Doksum, T., Bernhardt, B.A., & Metz, S.A. (1999). Participation in breast cancer susceptibility testing protocols: Influence of recruitment source, altruism, and family involvement on women's decisions. Cancer Epidemiology, Biomarkers and Prevention, 8, 377-383. (Pubitemid 29193893)
17. Gooding, H.C., Organista, K., Burack, J., & Biesecker, B.B. (2006). Genetic susceptibility testing from a stress and coping perspective. Social Science and Medicine, 62, 1880-1890.
18. Gurmankin, A.D., Domchek, S., Stopfer, J., Fels, C., & Armstrong, K. (2005). Patients' resistance to risk information in genetic counseling for BRCA1/2. Archives of Internal Medicine 165, 523-529. (Pubitemid 40344383)
19. Halbert, C.H., Kessler, L., Stopfer, J.E., Domchek, S., & Wileyto, E.P. (2006). Low rates of acceptance of BRCA1 and BRCA2 test results among African American women at increased risk for hereditary breast-ovarian cancer. Genetics in Medicine, 8, 576-582. (Pubitemid 44402035)
20. Hamilton, R.J., Bowers, B.J., & Williams, J.K. (2005). Disclosing genetic test results to family members. Journal of Nursing Scholarship, 37(1), 18-24. doi:10.1111/j.1547-5069.2005.00007.x. (Pubitemid 41632770)
21. Hughes, C., Lerman, C., Schwartz, M., Peshkin, B.N., Wenzel, L., Narod, S., . . . Main, D. (2002). All in the family: Evaluation of the process and content of sisters' communication about BRCA1 and BRCA2 genetic test results. American Journal of Medical Genetics, 107, 143-150. (Pubitemid 34038596)
22. Janis, I.L., & Mann, L. (1977). Decision-making: A psychological analysis of conflict, choice, and commitment. New York, NY: Free Press.
23. Katapodi, M.C., & Aouizerat, B.E. (2005). Do women in the community recognize hereditary and sporadic breast cancer risk factors? Oncology Nursing Forum, 32, 617-623. doi:10.1188/05.ONF.617-623.
24. Katapodi, M.C., Dodd, M.J., Facione, N.C., Humphreys, J.C., & Lee, K.A. (2010). Why some women have an optimistic or a pessimistic bias about breast cancer risk: Experiences, heuristics, and knowledge of risk factors. Cancer Nursing, 33, 64-73. doi: 10.1097/NCC.0b013e3181b430f9.
25. Katapodi, M.C., Dodd, M.J., Lee, K.A., & Facione, N.C. (2009). Underestimation of breast cancer risk: Influence on screening behavior. Oncology Nursing Forum, 36, 306-314. doi:10.1188/09.ONF.306-314.
26. Keenan, L.A., Lesniak, K.T., Guarnaccia, C.A., Althaus, B., Ethington, G., & Blum, J.L. (2004). Family environments of women seeking BRCA1/BRCA2 genetic mutation testing: An exploratory analysis. Journal of Genetic Counseling, 13, 157-176. (Pubitemid 39024179)
27. Kelly, K., Leventhal, H., Andrykowski, M., Toppmeyer, D., Much, J., Dermody, J., . . . Schwalb, M. (2004). The decision to test in women receiving genetic counseling for BRCA1 and BRCA2 mutations. Journal of Genetic Counseling, 13, 237-257. doi:10.1023/B:JOGC.0000027959.37096.78. (Pubitemid 39012929)
28. Kelly, K., Leventhal, H., Andrykowski, M., Toppmeyer, D., Much, J., Dermody, J., . . . Schwalb, M. (2005). Using the common sense model to understand perceived cancer risk in individuals testing for BRCA1/2 mutations. Psycho-Oncology, 14, 34-48. doi:10.1002/pon.805. (Pubitemid 40124672)
29. Landsbergen, K., Verhaak, C., Kraaimaat, F., & Hoogerbrugge, N. (2005). Genetic uptake in BRCA-mutation families is related to emotional and behavioral communication characteristics of index patients. Familial Cancer, 4, 115-119. doi:10.1007/s10689-004-7991-2. (Pubitemid 40897811)
30. Lazarus, R.S., & Folkman, S. (1984). Stress, appraisal, and coping. New York, NY: Springer.
31. Lerman, C., Croyle, R.T., Tercyak, K.P., & Hamann, H. (2002). Genetic testing: Psychological aspects and implications. Journal of Consulting and Clinical Psychology, 70, 784-797. doi:10.1037/0022-006X.70.3.784. (Pubitemid 34640743)
32. McCubbin, H.I., Thompson, A.I., & McCubbin, M.A. (1996). FPSC: Family problem solving communication. In H.I. McCubbin, A.I. Thompson & M.A. McCubbin (Eds.), Family assessment: Resiliency, coping, and adaptation (pp. 639-684). Madison, WI: University of Wisconsin.
33. Mellon, S., Berry-Bobovski, L., Gold, R., Levin, N., & Tainsky, M.A. (2006). Communication and decision-making about seeking inherited cancer risk information: Findings from female survivor-relative focus groups. Psycho-Oncology, 15, 193-208. doi:10.1002/pon.935.
34. Mellon, S., Gold, R., Janisse, J., Cichon, M., Tainsky, M.A., Simon, M.S., & Korczak, J. (2008). Risk perception and cancer worries in families at increased risk of familial breast/ovarian cancer. Psycho-Oncology, 17, 756-766. doi:10.1002/pon.1370.
35. Metcalfe, K.A., Birenbaum-Carmeli, D., Lubinski, J., Gronwald, J., Lynch, H., Moller, P., . . . Narod, S.A. (2008). International variation in rates of uptake of preventive options in BRCA1 and BRCA2 mutation carriers. International Journal of Cancer, 122, 2017-2022. doi:10.1002/ijc.23340. (Pubitemid 351441190)
36. Moos, R.H. (1987). The Social Climate Scales: A user's guide. Palo Alto, CA: Consulting Psychologists.
37. Moos, R.H. (1990). Conceptual and empirical approaches to developing family-based assessment procedures: Resolving the case of the Family Environment Scale. Family Process, 29, 199-208.
38. Moss-Morris, R., Weinman, J., Petrie, K.J., Horne, R., Cameron, L.D., & Buick, D. (2002). The revised Illness Perception Questionnaire (IPQ-R). Psychology and Health, 17(1), 1-16.
39. Nycum, G., Avard, D., & Knoppers, B.M. (2009). Factors influencing intrafamilial communication of hereditary breast and ovarian cancer genetic information. European Journal of Human Genetics, 17, 872-880.
40. O'Connor, A.M. (1995). Validation of a decisional conflict scale. Medical Decision Making, 15(1), 25-30. doi:10.1177/0272989X9501500105.
41. Pasacreta, J.V. (2003). Psychosocial issues associated with genetic testing for breast and ovarian cancer risk: An integrative review. Cancer Investigation, 21, 588-623. doi:10.1081/CNV-120022380. (Pubitemid 37169563)
42. Peterson, S.K. (2005). The role of the family in genetic testing: Theoretical perspectives, current knowledge, and future directions. Health Education and Behavior, 32, 627-639. doi:10.1177/1090198105278751. (Pubitemid 41426744)
43. Peterson, S.K., Pentz, R.D., Marani, S.K., Ward, P.A., Blanco, A.M., LaRue, D., . . . Strong, L.C. (2008). Psychological functioning in persons considering genetic counseling and testing for Li-Fraumeni syndrome. Psycho-Oncology, 17, 783-789. doi:10.1002/pon.1352.
44. Rees, G., Fry, A., Cull, A., & Sutton, S. (2004). Illness perceptions and distress in women at increased risk of breast cancer. Psychology and Health, 19, 749-765. doi:10.1080/08870440412331279764. (Pubitemid 40004499)
45. Reichelt, J.G., Møller, P., Heimdal, K., & Dahl, A.A. (2008). Psychological and cancer-specific distress at 18 months post-testing in women with demonstrated BRCA1 mutations for hereditary breast/ovarian cancer. Familial Cancer, 7, 245-254. doi:10.1007/s10689-008-9182-z.
46. Rini, C., O'Neill, S.C., Valdimarsdottir, H., Goldsmith, R.E., Jandorf, L., Brown, K., . . . Schwartz, M.D. (2009). Cognitive and emotional factors predicting decisional conflict among high-risk breast cancer survivors who receive uninformative BRCA1/2 results. Health Psychology, 28, 569-578. doi:10.1037/a0015205.
47. Rolland, J.S., & Williams, J.K. (2005). Toward a biopsychosocial model for 21st-century genetics. Family Process, 44(1), 3-24. doi: 10.1111/j.1545-5300.2005.00039.x. (Pubitemid 40465620)
48. Ropka, M.E., Wenzel, J., Phillips, E.K., Siadaty, M., & Philbrick, J.T. (2006). Uptake rates for breast cancer genetic testing: A systematic review. Cancer Epidemiology, Biomarkers and Prevention, 15, 840-855. (Pubitemid 43823507)
49. Schrag, D., Kuntz, K.M., Garber, J.E., & Weeks, J.C. (1997). Decision analysis-Effects of prophylactic mastectomy and oophorectomy on life expectancy among women with BRCA1 or BRCA2 mutations. New England Journal of Medicine, 336, 1465-1471. (Pubitemid 27208615)
50. Schwartz, M.D., Peshkin, B.N., Tercyak, K.P., Taylor, K.L., & Valdi-marsdottir, H. (2005). Decision making and decision support for hereditary breast/ovarian cancer susceptibility. Health Psychology, 24(4, Suppl.), S78-S84. doi:10.1037/0278-6133.24.4.S78. (Pubitemid 41099129)
51. Speice, J., McDaniel, S.H., Rowley, P.T., & Loader, S. (2002). Family issues in a psychoeducation group for women with a BRCA mutation. Clinical Genetics, 62, 121-127. doi:10.1034/j.1399-0004.2002.620204.x. (Pubitemid 36372711)
52. Tercyak, K.P., Demarco, T., Mars, B.D., & Peshkin, B.N. (2004). Women's satisfaction with genetic counseling for hereditary breast-ovarian cancer: Psychological aspects. American Journal of Medical Genetics, 131(A), 36-41. (Pubitemid 39434792)
53. Tercyak, K.P., Peshkin, B.N., DeMarco, T.A., Patenaude, A.F., Schneider, K.A., Garber, J.E., . . . Schwartz, M.D. (2007). Information needs of mothers regarding communicating BRCA1/2 cancer genetic test results to their children. Genetic Testing, 11, 249-255. doi: 10.1089/gte.2006.0534. (Pubitemid 47614409)
54. Trask, P.C., Paterson, A.G., Wang, C., Hayasaka, S., Milliron, K.J., Blumberg, L.R., . . . Merajver, S.D. (2001). Cancer-specific worry interference in women a breast and ovarian cancer risk evaluation program: Impact on emotional distress and health functioning. Psycho-Oncology, 10, 349-360. doi:10.1002/pon.510. (Pubitemid 32903999)
55. van Oostrom, I., Meijers-Heijboer, H., Duivenvoorden, H.J., Bröcker-Vriends, A.H., van Asperen, C.J., Sijmons, R.H., . . . Tibben, A. (2007a). The common sense model of self-regulation and psychological adjustment to predictive genetic testing: A prospective study. Psycho-Oncology, 16, 1121-1129. doi:10.1002/pon.1178. (Pubitemid 350302534)
56. van Oostrom, I., Meijers-Heijboer, H., Duivenvoorden, H.J., Bröcker-Vriends, A.H., van Asperen, C.J., Sijmons, R.H., . . . Tibben, A. (2007b). Prognostic factors for hereditary cancer distress six months after BRCA1/2 or HNPC genetic susceptibility testing. European Journal of Cancer, 43, 71-77. doi:10.1016/j.ejca.2006.08.023. (Pubitemid 46054471)
57. Wang, C., Gonzalez, R., Milliron, K.J., Strecher, V.J., & Merajver, S.D. (2005). Genetic counseling for BRCA1/2: A randomized controlled trial of two strategies to facilitate the education and counseling process. American Journal of Medical Genetics, 134A, 66-73. (Pubitemid 40418570)
58. Wilson, B.J., Forrest, K., van Teijlingen, E.R., McKee, L., Haites, N., Matthews, E., & Simpson, S.A. (2004). Family communication about genetic risk: The little that is known. Community Genetics, 7(1), 15-24.
59. Wooster, R., Bignell, G., Lancaster, J., Swift, S., Seal, S., Mangion, J., Micklem, G. (1995). Identification of the breast cancer susceptibility gene BRCA2. Nature, 378, 789-792. doi:10.1038/378789a0. (Pubitemid 26004412)
60. Wylie, J.E., Smith, K.R., & Botkin, J.R. (2003). Effects of spouses on distress experienced by BRCA1 mutation carriers over time. American Journal of Medical Genetics, 119C, 35-44. doi:10.1002/ajmg.c.10002. (Pubitemid 37064099)