References
- Claus EB, Schildkraut JM, Thompson WD, Risch NJ. The genetic attributable risk of breast and ovarian cancer. Cancer77(11), 2318–2324 (1996).
- Miki Y, Swensen J, Shattuck-Eidens D et al. A strong candidate for the breast and ovarian cancer susceptibility gene BRCA1. Science266(5182), 66–71 (1994).
- Wooster R, Bignell G, Lancaster J et al. Identification of the breast cancer susceptibility gene BRCA2. Nature378(6559), 789–792 (1995).
- Struewing JP, Hartge P, Wacholder S et al. The risk of cancer associated with specific mutations of BRCA1 and BRCA2 among Ashkenazi Jews. N. Engl. J. Med.336(20), 1401–1408 (1997).
- Ford D, Easton DF, Stratton M et al. Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. The Breast Cancer Linkage Consortium. Am. J. Hum. Genet.62(3), 676–689 (1998).
- Haffty BG, Harrold E, Khan AJ et al. Outcome of conservatively managed early-onset breast cancer by BRCA1/2 status. Lancet359(9316), 1471–1477 (2002).
- Easton DF, Ford D, Bishop DT. Breast and ovarian cancer incidence in BRCA1-mutation carriers. Breast Cancer Linkage Consortium. Am. J. Hum. Genet.56(1), 265–271 (1995).
- Shahedi K, Emanuelsson M, Wiklund F, Gronberg H. High risk of contralateral breast carcinoma in women with hereditary/familial non-BRCA1/BRCA2 breast carcinoma. Cancer106(6), 1237–1242 (2006).
- Weitzel JN, McCaffrey SM, Nedelcu R, MacDonald DJ, Blazer KR, Cullinane CA. Effect of genetic cancer risk assessment on surgical decisions at breast cancer diagnosis. Arch. Surg.138(12), 1323–1328; discussion 1329 (2003).
- Armstrong K, Calzone K, Stopfer J, Fitzgerald G, Coyne J, Weber B. Factors associated with decisions about clinical BRCA1/2 testing. Cancer Epidemiol. Biomarkers Prev.9(11), 1251–1254 (2000).
- Lerman C, Hughes C, Lemon SJ et al. What you don’t know can hurt you: adverse psychologic effects in members of BRCA1-linked and BRCA2-linked families who decline genetic testing. J. Clin. Oncol.16(5), 1650–1654 (1998).
- 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. Cancer Genetics Studies Consortium. JAMA277(12), 997–1003 (1997).
- Tercyak KP, Peshkin BN, Streisand R, Lerman C. Psychological issues among children of hereditary breast cancer gene (BRCA1/2) testing participants. Psychooncology10(4), 336–346 (2001).
- Helmes AW, Bowen DJ, Bengel J. Patient preferences of decision-making in the context of genetic testing for breast cancer risk. Genet. Med.4(3), 150–157 (2002).
- Mishel MH, Germino BB, Gil KM et al. Benefits from an uncertainty management intervention for African–American and Caucasian older long-term breast cancer survivors. Psychooncology14(11), 962–978 (2005).
- Nelson JP. Struggling to gain meaning: living with the uncertainty of breast cancer. ANS Adv. Nurs. Sci.18(3), 59–76 (1996).
- O’Neill SC, DeMarco T, Peshkin BN et al. Tolerance for uncertainty and perceived risk among women receiving uninformative BRCA1/2 test results. Am. J. Med. Genet. C. Semin. Med. Genet.142(4), 251–259 (2006).
- Lerman C, Croyle RT, Tercyak KP, Hamann H. Genetic testing: psychological aspects and implications. J. Consult. Clin. Psychol.70(3), 784–797 (2002).
- Brennan PF, Strombom I. Improving health care by understanding patient preferences: the role of computer technology. J. Am. Med. Inform. Assoc.5(3), 257–262 (1998).
- Bridges J, Onukwugha E, Johnson FR, Hauber AB. Patient preference methods – a patient centered evaluation paradigm. ISPOR Connections13(6), 4–7 (2007).
- Samuelson PA. A note on the pure theory of consumers’ behaviour. Econometrica5, 353–354 (1938).
- Ryan M. Using conjoint analysis to take account of patient preferences and go beyond health outcomes: an application to in vitro fertilisation. Soc. Sci. Med.48(4), 535–546 (1999).
- Viney R, Lancsar E, Louviere J. Discrete choice experiments to measure consumer preferences for health and healthcare. Exp. Rev. Pharmacoeconomics Outcomes Res.2(4), 2319–2326(8) (2002).
- Bridges JF. Stated preference methods in health care evaluation: an emerging methodological paradigm in health economics. Appl. Health Econ. Health Policy2(4), 213–224 (2003).
- Sculpher M, Gafni A. Recognizing diversity in public preferences: the use of preference sub-groups in cost-effectiveness analysis. Health Econ.10(4), 317–324 (2001).
- Cappelli M, Surh L, Humphreys L et al. Measuring women’s preferences for breast cancer treatments and BRCA1/BRCA2 testing. Qual. Life Res.10(7), 595–607 (2001).
- Lerman C, Daly M, Walsh WP et al. Communication between patients with breast cancer and health care providers. Determinants and implications. Cancer72(9), 2612–2620 (1993).
- Kahn KL, Schneider EC, Malin JL, Adams JL, Epstein AM. Patient centered experiences in breast cancer: predicting long-term adherence to tamoxifen use. Med. Care45(5), 431–439 (2007).
- Susan G. Komen for the Cure. Advocate perspective: advancing science-based approaches to breast cancer prevention. Cancer109(12 Suppl.), 2750–2751 (2007).
- Visco F. The National Breast Cancer Coalition: setting the standard for advocate collaboration in clinical trials. Cancer Treat. Res.132, 143–156 (2007).
- Mayer DK, Terrin NC, Kreps GL et al. Cancer survivors information seeking behaviors: a comparison of survivors who do and do not seek information about cancer. Patient Educ. Couns.65(3), 342–350 (2007).
- Helft PR. Breast cancer in the information age: a review of recent developments. Breast Dis.21, 41–46 (2004).
- Alderman AK, Hawley ST, Waljee J, Mujahid M, Morrow M, Katz SJ. Understanding the impact of breast reconstruction on the surgical decision-making process for breast cancer. Cancer112(3), 489–494 (2007).
- Vogt F, Schwappach DL, Bridges JF. Accounting for tastes: a German perspective on the inclusion of patient preferences in healthcare. Pharmacoeconomics24(5), 419–423 (2006).
- Institute of Medicine Committee on Quality of Health Care in America. Crossing the Quality Chasm: A New Health System for the 21st Century. National Academy Press, Washington, DC, USA (2001).
- Clancy C. Arming Health Care Consumers. Testimony Before the Joint Economic Committee, US Department of Health and Human Services (2006).
- Executive Order: Promoting Quality and Efficient Health Care in Federal Government Administered or Sponsored Health Care Programs. 13410 (2006).
- Oskay-Ozcelik G, Lehmacher W, Konsgen D et al. Breast cancer patients’ expectations in respect of the physician-patient relationship and treatment management results of a survey of 617 patients. Ann. Oncol.18(3), 479–484 (2007).
- Bruera E, Willey JS, Palmer JL, Rosales M. Treatment decisions for breast carcinoma: patient preferences and physician perceptions. Cancer94(7), 2076–2080 (2002).
- Bruera E, Sweeney C, Calder K, Palmer L, Benisch-Tolley S. Patient preferences versus physician perceptions of treatment decisions in cancer care. J. Clin. Oncol.19(11), 2883–2885 (2001).
- Degner LF, Kristjanson LJ, Bowman D et al. Information needs and decisional preferences in women with breast cancer. JAMA277(18), 1485–1492 (1997).
- Audrain J, Rimer B, Cella D et al. Genetic counseling and testing for breast-ovarian cancer susceptibility: what do women want? J. Clin. Oncol.16(1), 133–138 (1998).
- Neuman HB, Charlson ME, Temple LK. Is there a role for decision aids in cancer-related decisions? Crit. Rev. Oncol. Hematol.62(3), 240–250 (2007).
- Loukanova S, Molnar R, Bridges JF. Promoting patient empowerment in the healthcare system: highlighting the need for patient-centered drug policy. Exp. Rev. Pharmacoeconomics Outcomes Res.7(3), 281–289 (2007).
- Schapira MM, Nattinger AB, McAuliffe TL. The influence of graphic format on breast cancer risk communication. J. Health Commun.11(6), 569–582 (2006).
- Paik S, Shak S, Tang G et al. A multigene assay to predict recurrence of tamoxifen-treated, node-negative breast cancer. N. Engl. J. Med.351(27), 2817–2826 (2004).
- Metcalfe K, Liede A, Trinkaus M, Hanna D, Narod S. Evaluation of the needs of spouses of female carriers of mutations in BRCA1 and BRCA2. Clin. Genet.62(6), 464–469 (2002).