A decision aid for women at increased risk for ovarian cancer

International Journal of Gynecological Cancer

Volumn 13, Issue 1, 2003, Pages 15-22

  Tiller, Kerry ^a,f   Meiser, B ^b   Reeson, E ^b   Tucker, M ^a   Andrews, L ^a   Gaff, C ^c   Kirk, J ^d   Phillips, K A ^e   Friedlander, M ^a  

^a PRINCE OF WALES HOSPITAL   (Australia)

^b ROYAL NORTH SHORE HOSPITAL   (Australia)

^c ROYAL MELBOURNE HOSPITAL   (Australia)

^d WESTMEAD HOSPITAL   (Australia)

^e PETER MACCALLUM CANCER CENTRE   (Australia)

^f MACQUARIE UNIVERSITY   (Australia)

Author keywords

Decision aids; Hereditary ovarian cancer; Risk management options

Indexed keywords

ORAL CONTRACEPTIVE AGENT;

ARTICLE; CANCER PREVENTION; CANCER RISK; CANCER SCREENING; CHEMOPROPHYLAXIS; HEALTH SURVEY; HUMAN; MEDICAL DECISION MAKING; OVARY CANCER; PATIENT COUNSELING; PRIORITY JOURNAL; RISK MANAGEMENT; TECHNICAL AID;

ADULT; DECISION SUPPORT TECHNIQUES; FEMALE; HUMANS; OVARIAN NEOPLASMS; RISK FACTORS;

EID: 0345269854     PISSN: 1048891X     EISSN: None     Source Type: Journal    
DOI: 10.1046/j.1525-1438.2003.13018.x     Document Type: Article

References (71)

1. NHMRC. Familial aspects of cancer: A guide to clinical practice. Clinical Practice Guidelines. Canberra: Australian Cancer Network, 1999.
2. Rosenthal A, Jacobs I. Ovarian cancer screening. Semin Oncol 1998;25:315-25.
3. Greenlee R, Murray T, Bolden S, Wingo P. Cancer statistics. CA-A Cancer J Clin 2000;50:1-33.
4. Schildkraut JM, Thompson WD. Familial ovarian cancer: a population-based case-control study. Am J Epidemiol 1988;128:456-66.
5. Easton DF, Ford D, Bishop DT, the Breast Cancer Linkage Consortium. Breast and ovarian cancer incidence in BRCA1-mutation carriers. Am J Hum Genet 1995;56:265-71.
6. Wooster R, Neuhausen SL, Mangion J et al. Localization of a breast cancer susceptibility gene, BRCA2, to chromosome 13q12-13. Science 1994;265:2088-90.
7. Vasen HF, Wijnen JT, Menko FH et al. Cancer risk in families with hereditary nonpolyposis colorectal cancer diagnosed with mutation analysis. Gastroenterol 1996;110:1020-7.
8. Lynch H, Casey M. Current status of prophylactic surgery for hereditary breast and gynecologic cancers. Curr Opin Obstet Gynecol 2001;13:25-30.
9. Thompson D, Easton D, Consortium BCL. Variation in cancer risks, by mutation position, in BRCA2 carriers. Am J Hum Genet 2001;68:410-9.
10. Risch H, McLaughlin J, Cole D et al. Prevalence and penetrance of germline BRCA 1 and BRCA 2 mutations in a population series of 649 women with ovarian cancer. Am J Hum Genet 2001;68:700-10.
11. NIH Consensus Development Panel on Ovarian Cancer. Ovarian cancer: Screening, treatment and follow-up. JAMA 1995;273:491-7.
12. Burke W, Daly M, Garber J et al. Recommendations for follow-up care of individuals with an inherited predisposition to cancer. II. BRCA1 and BRCA2. JAMA 1997;277:997-1003.
13. Eisinger F, Alby N, Bremond A et al. Recommendations for medical management of hereditary breast and ovarian cancer: The French Natl Ad Hoc Committee. Ann Oncol 1998;9:939-50.
14. Vasen HE Current policies for surveillance and management in women at risk of breast and ovarian cancer: a survey among 16 European family cancer clinics. Eur J Cancer 1998;34:1922-6.
15. Burke W, Petersen G, Lynch P. Recommendations for follow-up care of individuals with an inherited predisposition to cancer. I. Hereditary non-polyposis colorectal cancer. JAMA 1997;277:915-9.
16. Narod SA, Risch H, Moleshi R et al. Oral contraceptives and the risk of hereditary ovarian cancer. N Engl J Med 1998;339:424-8.
17. Modan B, Hartge P, Hirsh-Yechezkel G et al. Parity, oral contraceptives, and the risk of ovarian cancer among carriers and noncarriers of a BRCA1 or BRCA2 mutation. N Engl J Med 2001;345:235-40.
18. Bourne T, Campbell S, Reynolds K et al. Screening for early familial ovarian cancer with transvaginal ultrasonography and colour flow imaging. Br Med J 1993; 306:1025-9.
19. Friedlander M, Tucker K. Hereditary ovarian cancer. Cancer Forum 1997;21:10-3.
20. Wardle FJ, Collins W, Pernet AL, Whitehead MI, Bourne TH, Campbell S. Psychological impact of screening for familial ovarian cancer. J Nat Cancer Inst 1993;85:653-7.
21. Wardle J, Pernet A, Collins W, Bourne T. False positive results in ovarian cancer screening. One year follow-up of psychological status. Psychol Health 1994;10:33-40.
22. Sato S, Yokoyama Y, Sakamoto T, Futagami M, Saito Y. Usefulness of mass screening for ovarian carcinoma using transvaginal ultrasonography. Cancer 2000; 89:582-8.
23. Van Nagell JR, DePriest PD, Reedy MB et al. The efficacy of transvaginal sonographic screening in asymptomatic women at risk for ovarian cancer. Gynecol Oncol 2000;77:350-6.
24. Bell R, Pettigrew M, Sheldon T. The performance of screening tests for ovarian cancer: Results of a systematic review. Br J Obstet Gynaecol 1998;105:1136-47.
25. Grabrick D, Hartmann L, Cerhan J et al. Risk of breast cancer with oral contraceptive use in women with a family history of breast cancer. JAMA 2000;284:1791-8.
26. Burke W. Oral contraceptives and breast cancer: a note of caution for high-risk women. JAMA 2000;284:1791-8.
27. Narod S, Sun P, Ghadirian P et al. Tubal ligation and risk of ovarian cancer in carriers of BRCA1 or BRCA2 mutations: a case-control study. Lancet 2001;357:1467-70.
28. Whittemore A, Harris R, Intyre J. Characteristics relating to ovarian cancer risk. collaborative analysis of 12 US case-controlled studies II. Invasive epithelial ovarian cancers in white women. Am J Epidemiol 1992;136:1184-203.
29. Rosenblatt K, Thomas D. Reduced risk of ovarian cancer in women with a tubal ligation or hysterectomy. The World Health Organization collaborative study of neoplasia and steroid contraceptives. Cancer Epidemiol Biomarkers Prev 1996;5:933-5.
30. Weber B, Punzalen C, Eisen A et al. Ovarian cancer risk reduction after bilateral prophylactic oophorectomy in BRCA1 and BRCA2 mutation carriers. Am J Hum Genet 2000;2 (Supp.):59 (abstr).
31. Tobacman JK, Greene MH, Tucker MA, Costa J, Kase R, Fraumeni JF. Intra-abdominal carcinomatosis after prophylactic oophorectomy in ovarian-cancer-prone families. Lancet 1982;2:795-7.
32. Piver MS, Jishi MF, Tsukada Y, Nava G. Primary peritoneal carcinoma after prophylactic oophorectomy in women with a family history of ovarian cancer. Cancer 1993;71:2751-5.
33. Rebbeck TR, Levin AM, Eisen A, Snyder C, Watson P, Cannon-Albright L. Breast cancer risk after bilateral prophylactic oophorectomy in BRCA1 mutation carriers. J Nat Cancer Inst 1999;91:1475-9.
34. Hallowell N. A qualitative study of the information needs of high-risk women undergoing prophylactic oophorectomy. Psychooncology 2000;9:486-95.
35. Meiser B, Tiller K, Gleeson M, Andrews L, Robertson G, Tucker K. Psychological impact of prophylactic oophorectomy in women at risk for hereditary ovarian cancer. Psychooncology 2000;9:496-503.
36. Meiser B, Butow P, Barratt A et al. Attitudes to prophylactic oophorectomy and screening utilization in women at increased risk of developing hereditary breast/ovarian cancer. Gynecol Oncol 1999;75:122-9.
37. Hurley K, Miller S, Costalas M, Gillespie D, Daly M. Anxiety/uncertainty reduction as a motivation for interest in prophylactic oophorectomy in women with a family history of ovarian cancer. J Womens Health Gend Based Med 2001;10:189-99.
38. Miller SM, Fang CY, Manne SL, Engstrom PF, Daly MB. Decision making about prophylactic oophorectomy among at-risk women. Psychological influences and implications. Gynecol Oncol 1999;75:406-12.
39. Lerman C, Biesecker B, Benkendorf JL. Controlled trial of pretest education approaches to enhance informed decision-making for BRCA1 gene testing. J Nat Cancer Inst 1997;89:148-57.
40. Janis IL, Mann L. Decision Making: A Psychological Analysis of Conflict, Choice and Commitment. New York: The Free Press, 1977.
41. Charles C, Gafni A, Whelan T. Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango). Soc Sci Med 1997;44:681-92.
42. Frosch D, Kaplan R. Shared decision making in clinical medicine. Past research and future directions. Am J Prev Med 1999;17:285-94.
43. Leydon G, Boulton M, Moynihan C et al. Cancer patients' information needs and information seeking behaviour: in depth interview study. Br Med J 2000;320:909-13.
44. Cassileth B, Zupkis R. Sutton-Smith K, March V. Information and participation preferences among cancer patients. Ann Intern Med 1980;92:832-6.
45. Strull W, Lo B, Charles G. Do patients want to participate in medical decision making? JAMA 1984;252:2990-4.
46. Fallowfield L, Ford S, Lewis S. No news is not good news. Information preferences of patients with cancer. Psycho-Oncol 1995;4:197-202.
47. Coulter A, Entwistle V, Gilbert D. Sharing decisions with patients: is the information good enough? Br Med J 1999;318:318-22.
48. Stewart DE, Wong F, Cheung AM et al. Information needs and decisional preferences among women with ovarian cancer. Gynecol Oncol 2000;77:357-61.
49. Edwards A, Elwyn G. The potential benefits of decision aids in clinical medicine. JAMA 1999;282:779-80.
50. Lerman C, Brody D, Caputo G, Smith D, Lazaro C, Wolfson H. Patients' Perceived Involvement in Care Scale. relationship to attitudes about illness and medical care. J Gen Intern Med 1990;5:29-33.
51. Brody D, Miller S, Lerman C, Smith D, Caputo G. Patient perception of involvement in medical care: relationship to illness attitudes and outcomes. J Gen Intern Med 1989;4:506-11.
52. O'Connor AM. Decision aids for patients considering options affecting cancer outcomes. Evidence of efficacy and policy implications. J Nat Cancer Inst 1999;25:67-80.
53. Whelan T, Levine M, Gafni A et al. Breast irradiation postlumpectomy. Development and evaluation of a decision instrument. J Clin Oncol 1995;13:847-53.
54. O'Connor A, Llewellyn-Thomas H, Sawka C, Pinfold S, To T, Harrison D. Physicians' opinions about decision aids for patients considering systemic adjuvant therapy for auxillary-node negative breast cancer. Pat Educ Counsel 1997;30:143-53.
55. Molenaar S, Mirjam A, Sprangers GCF, Postma-Schuit E, Emiel J et al. Feasibility and effects of decision aids. Med Decis Making 2000;20:112-27.
56. Elit L, Levine M, Gafni A et al. Patients' preferences for therapy in advanced epithelial ovarian cancer. Development, testing, and application of a bedside decision instrument. Gynecol Oncol 1996;62:329-35.
57. Drake E, Engler-Todd L, O'Connor A, Surh L, Hunter A. Development and evaluation of a decision aid about prenatal testing for women of advanced maternal age. J Genet Couns 1999;8:217-33.
58. Man-Son-Hing M, Laupacis A, O'Connor A et al. A patient decision aid regarding antithrombotic therapy for stroke prevention in atrial fibrillation: a randomised controlled trial. JAMA 1999;282:737-43.
59. Lawrence V, Streiner D, Hazuda H, Naylor R, Levine M, Gafni A. A cross-cultural consumer-based decision aid for screening mamography. Prev Med 2000;30:200-8.
60. O'Connor A, Tugwell P, Welles GA et al. Randomized trial of a portable, self-administered decision aid for postmenopausal women considering long-term preventative hormone replacement therapy. Med Decis Making 1998;18:295-303.
61. Meiser B, Eisenbruch M, Barlow-Stewart K, Tucker K, Steel Z, Goldstein D. Cultural aspects of cancer genetics: Setting a research agenda. J Med Genet 2001;38:425-9.
62. Molenaar S, Sprangers G, Mirjam A et al. Decision support for patients with early breast cancer. Effects of an interactive breast cancer CDROM on treatment decision, satisfaction, and quality of life. J Clin Oncol 2001;19:1676-87.
63. Stalmeier P, Unic I, Verhoef L, Van Daal W. Evaluation of a shared decision making program for women suspected to have a genetic predisposition to breast cancer. Med Decis Making 1999;19:230-41.
64. Lawrence W. Patient selection for clinical trials. Risks versus benefits and quality of life issues. Cancer Suppl 1993;72:2798-808.
65. NHMRC. How to present evidence for consumers. preparation of consumer publications. Canberra, Australia: National Health and Medical Research Council; 1999.
66. O'Connor AM. Evaluation standards for patient decision supports. Med Decis Making 1995;15:2-3.
67. O'Connor AM, Pennie RA, Dales RE. Framing effects on expectations, decisions and side effects experienced: The case of influenza immunization. J Clin Epidemiol 1996; 49:1271-6.
68. O'Connor AM, Tugwell P, Wells GA et al. A decision aid for women considering hormone therapy after menopause. Decision support framework and evaluation. Pat Educ Counsel 1998;33:267-79.
69. O'Connor A, Tugwell P, Elmslie T, Jolly E. Making Choices: Hormones after menopause. Ottawa, Canada: Loeb Medical Research Institute, 1996.
70. Evans W, O'Connor A, Fiset V, Logan J, DeGrasse C. Making Choices. Treatment of Stage IV (metastatic) non-small cell lung cancer. Ottawa, Canada: Loeb Medical Research Institute, 1997.
71. Fishman D, Cohen L. Is transvaginal ultrasound effective for screening asymptomatic women for the detection of early-stage epithelial ovarian cancer? Gynecol Oncol 2000;77:347-9.