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    内容提示: Risk communication and decision-making in the prevention ofinvasive breast cancerAnn H. PartridgeDana-Farber Cancer Institute, 450 Brookline Avenue, Boston, MA, 02215, USAa r t i c l e i n f oArticle history:Available online 8 July 2017a b s t r a c tRisk communication surrounding the prevention of invasive breast cancer entails not only understandingof the disease, risks and opportunities for intervention. But it also requires understanding and imple-mentation of optimal strategies for communication with ...

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    Risk communication and decision-making in the prevention ofinvasive breast cancerAnn H. PartridgeDana-Farber Cancer Institute, 450 Brookline Avenue, Boston, MA, 02215, USAa r t i c l e i n f oArticle history:Available online 8 July 2017a b s t r a c tRisk communication surrounding the prevention of invasive breast cancer entails not only understandingof the disease, risks and opportunities for intervention. But it also requires understanding and imple-mentation of optimal strategies for communication with patients who are making these decisions. In thisarticle, available evidence for the issues surrounding risk communication and decision making in theprevention of invasive breast cancer are reviewed and strategies for improvement are discussed.© 2017 Elsevier Ltd. All rights reserved.Breast cancer is the most commonly diagnosed cancer inwomen worldwide, with an increasing incidence in recent years inthe developing world largely due to increased life expectancy andadoption of westernlifestyles. In the primary prevention of invasivebreast cancer, it is important toconsider 3 general groups. There arewomen in the general population who are at “population risk” ofgetting breast cancer and for whom various models are used topredict an individual woman's risk (e.g., Gail model, Tyrer-Cuzickmodel). Women with higher risk of disease should also beconsidered based either on a strong family history, including thosewith a known genetic predisposition, or based on their personalmedical history. Women in this “high risk” group include in-dividuals with a historyof a prior risk lesion diagnosed in the breastsuch as atypical ductal/lobular hyperplasia (ADH/ALH) or lobularcarcinoma in situ (LCIS) or prior history of therapeutic radiation tothe chest. Finally, women with ductal carcinoma in situ (DCIS)represent a unique cohort toconsider with regard to the preventionof invasive breast cancer given they have stage 0, noninvasivedisease but are at very high risk of subsequently developing inva-sive disease. These groups have different risks of disease andcorrespondingly different though related options for preventionand management of risk. Options for population risk womeninclude screening, lifestyle recommendations, and chemopreven-tionwith tamoxifen, raloxifen oraromatase inhibitors, although thelatter strategy is not FDA approved in the U.S.. Despite clear benef i tsfrom chemoprevention, patient uptake and adherence in the pri-mary prevention setting has been limited [1].For high risk women, addition of more sensitive screening forearly detection (e.g., breast MRI) as well as risk-reducing salpingo-oophorectomy and/or prophylactic mastectomy are options. Here,there are increasing data for the benef i ts of these strategies withregard to disease free and overall survival for women with BRCA 1or BRCA 2 mutations in particular, although barriers remainregarding counseling, testing and pursuit of intervention for manywomen [2].The advent and growth of population-based screeningmammographyover the past several decades have led to a dramaticincrease in the incidence of ductal carcinoma in situ (DCIS), provingsubstantial opportunities and challenges [3,4]. DCIS encompasses aheterogeneous group of lesions with a variable natural history andrisk of progression to invasive breast cancer and treatment remainshighly variable and controversial. Although DCIS itself does notmetastasize and is rarely lethal, it may be a precursor of invasivebreast cancer and is a clear marker of increased risk of invasivebreast cancer. Thus, eventhoughDCIS is fairly distinct from invasivedisease, options for management of DCIS include most treatmentsoffered for invasive disease except chemotherapy, including sur-gery with or without radiation to the affected breast, tamoxifen oraromatase inhibitor therapy, with recently launched studies eval-uating the option of active surveillance for the management oflower risk DCIS [5].In management of DCIS, Physicians note that decision-makingabout treatment for DCIS is very diff i cult for patients and DCISpatients over-estimate their risk of recurrence [6]. In one study,over 25% believed they have at least moderate likelihood of DCISspreading to other places in their body [7]. In another, women withDCIS perceived similar risks as women with T1/T2 tumors [8].Further, these inaccurate perceptions appear to persist over time,E-mail address: ahpartridge@partners.org.Contents lists available at ScienceDirectThe Breastjournal homepage: www.elsevier.com/brsthttp://dx.doi.org/10.1016/j.breast.2017.06.0280960-9776/© 2017 Elsevier Ltd. All rights reserved.The Breast 34 (2017) S55eS57 and are strongly associated with anxiety [7,9].This anxiety and inaccurate risk perceptions surrounding DCISmay be due in part because DCIS is not a disease with which mostwomen are familiar, and among those diagnosed, there is a lack ofunderstanding of the disease entity, particularly with regard to thenon-invasive nature and whether or not it is “cancer” or couldspread to other places in a woman's body and become life-threatening. The common use of the term “breast cancer”, torefer to both DCIS as well as invasive disease, likely adds to theconfusion given the different and much greater risks associatedwith invasive breast cancer compared to DCIS, Stage 0, or non-invasive breast cancer. Some have argued that consideration begiven to removing the term “carcinoma” from DCIS, using cancer“occurrence” to mean the diagnosis of invasive cancer after DCISinstead of “recurrence,” shifting to a prophylactic paradigm oftreatment after excision of DCIS [10]. One recent survey studyrevealed that when DCIS was framed as a high-risk condition ratherthan as cancer, a substantial proportion of women surveyed shiftedtheir treatment preferences in theoretical scenarios from surgicaltononsurgical treatments suggesting that many women may prefera less invasive, nonsurgical option if allowed to weigh each choiceand its attendant risks [11]. Others have countered that changes innomenclature would not likely result in different decisions beingmade by women especiallygiven treatment options are the same asinvasive cancer [3,12].While decisions are usually less urgent in the primary preven-tion setting, there is also evidence that women at high risk ofdeveloping breast cancer have inaccurate risk perceptions whichmay hamper optimal decision-making. In a prospective interviewand survey studyat a high risk clinic including 146 high risk womenand 4 physicians, women's preferences for prevention in-terventions varied widelyacross women, although they werestableacross time. Women overestimated their risk of disease, and phy-sicians overestimated the decrease in perceived risk resulting fromcounseling (p < 0.001), and were not reliable able to predict theirpatients' preferences with regard to risk reducing strategies [13].Thus, there is great opportunity to improve risk communicationand decision-making in the prevention of invasive breast cancer.Despite differences in risk and conventional options available forrisk reduction between the different groups of women at risk, thereare several generalizable concepts that apply each of these settings,as well as several other early breast cancer situations where de-cisions need be made, which may improve risk communication andassociated decision making.The main ingredients for a good decision include 1) communi-cation of the risks of the disease, and clear disclosure of the po-tential risks and benef i ts of a given intervention for that individual;2) Assessment and integration of patient values and preferencesinto decision; 3) Ability to implement a plan based on decisionsmade. Each step along the way, there are challenges whenconsidering decision making surrounding the prevention of inva-sive breast cancer. The gold standard for optimal health decisions isshared decision making, which has been described as “the processof interacting with patients who wish to be involved in arriving atan informed, values-based choice among two or more medicallyreasonable alternatives.” [14] In the setting of certain health de-cisions, anxiety may be a strong driver of decisions, and optimalpatient-centered communication therefore also requires attentionand response to patient emotions, and help to manage uncertainty[1]. In the context of prevention of invasive breast cancer, decisionsmay be particularly complicated and emotional given the highlyvisible culture of breast cancer, both good and bad aspects, in thedeveloped world. A woman's prior experience with the disease islikely to impact on her emotional reaction to prevention of thedisease and treatments. For example, if a woman's mother or sisterdied of breast cancer, she may be more likely to be anxious whenfacing and making decisions about her own risk and risk reduction.Limitations of our general knowledge adds additional uncertaintyabout the risk of disease both on a population and individual level.In busy clinics, assessment and integration of patient values andpreferences into decision-making is diff i cult and time may notallow for deliberation between patient and provider, and patientsmay perceive urgency to make a decision, particularly in the settingof DCIS given there are standard guidelines for treatment. Finally,the ability to implement any given decision is not universal andthere remain issues of patient access, self-eff i cacy, and adherencethat might thwart intervention efforts.Despite these challenges, there is the potential for optimizingdecision-making surrounding the prevention of invasive cancer forwomen at risk including those with DCIS to improve decision. Theneed for better risk predictors for an individual both in terms of riskof disease as well as risk of an adverse outcome from preventionintervention is the subject of much ongoing research [5]. Of course,more palatable options for the management of risk are alwaysdesired and clinical trials are underway to increase the number ofchoices available for women at risk or who have developed DCIS,including consideration of active surveillance for the latter in theLORIS, COMET, and LORD clinical trials [5].(www.clinicaltrials.gov/).Finally, better ways to communicate risks and benef i ts of man-agement options need to be integrated into routine clinical care,especially taking into account strategies for recognition and man-agement of emotions and anxiety in particular surrounding suchdecisions. Fortunately, decision aids are evidence-based tools thathave been developed to help people participate in decisions thatinvolve weighing the benef i ts and harms of treatment options oftenwith scientif i c uncertainty. A recent Cochrane Review of a total of115 studies of decision aids involving 34,444 participants revealedthat compared to usual care, decision aids increased knowledge,with detailed tools faring better than simple ones with regard toincreasing knowledge [15]. Decision aids with expressed proba-bilities resulted in a higher proportion of people with accurate riskperceptions and those with explicit values clarif i cation resulted in ahigher proportion of patients choosing an option congruent withtheir values. Decision aids compared to usual care interventionsresulted in: a) lower decisional conf l ict related to feeling unin-formed and feeling unclear about personal values; b) reducedproportions of people who were passive in decision making; and c)reduced proportions of people who remained undecided. Overall,decision aids appeared to have a positive effect on patient-practitioner communication and lead to greater or equal patientsatisfaction compared with usual care. Importantly, decision aidsappeared to have a variable effect on choices made though theyreduced the number of people of choosing major elective invasivesurgery in favor of more conservative options and reduced thenumber of people choosing to have prostate-specif i c antigenscreening. With regard to burden, decision aids affected the lengthof medical consultations varying from 8 min shorter to 23 minlonger (median 2.55 min longer) and groups of patients receivingdecision aids did not appear to differ from comparison groups interms of anxiety, general health outcomes, and condition-specif i chealth outcomes [14].There are a number of decision tools available aimed at helpingwomen at risk for breast cancer or with a diagnosis of DCIS. TheAmerican Society of Clinical Oncology has an informative decisionboard that nicely lays out the options for chemoprevention (http://www.instituteforquality.org/sites/instituteforquality.org/f i les/bcrr_option_gridk_7-10-13.pdf, accessed 3-18-17). The LORIS trial, aphase III study in the U.K. comparing surgery to active surveillancefor women with low risk DCIS has a patient oriented website withinformative videos meant to educate women about their optionsA.H. Partridge / The Breast 34 (2017) S55eS57 S56 for DCIS management and the trial in particular (www.birmingham.ac.uk/research/activity/mds/trials/crctu/trials/loris/index.aspx).The COMET study, a phase III trial in the U.S. similarly comparesactive surveillance to guideline concordant care and has a recentlylaunched website focused on educating women about DCIS ingeneral, detailing treatment options and the COMET trial forwomen with low risk disease(www.DCISoptions.org). The site willultimately incorporate an evidence-based decision tool that hasbeen developed, which helps women to make decisions consonantwith their preferences and values about DCIS.There are a number of strategies that can be used to improvecommunication and decision making with patients [16]. Theseinclude using decision aids if available (or making simple ones ifone is not available). Use of positive and negative framing to discusslogically equivalent information in different forms can also be quitehelpful. For example, a 10% risk of local recurrence means there is a90% chance of not having a local recurrence and the latter statisticmay be more helpful and reassuring for a patient. Discussion ofactual risks often conveys are more accurate risk perception andputting risks into context for the patient with regard to othermedical risks can be quite informative. Use non medical language,address uncertainty related to the diagnosis and make an effort tolisten carefully tothe patient to: understand patient values, identifyand deal with misconceptions, and recognize and validate emo-tions, and provide or refer for additional support. Finally, decisionsshould not be rushed as decisions surrounding the prevention ofinvasive breast cancer are rarely if ever an emergency. Conversely,however, it is prudent to arrange follow-up with a woman makingdecisions surrounding the prevention of invasive cancer so de-cisions are ultimately made and “analysis paralysis” or avoidance ofthe decision does not lead to passive decisions.In summary, risk communication and decision making for theprevention of invasive breast cancer is complicated. But, decisionsmust be made and incorporating available evidence and decisionaids when available into patient care can improve medical andpsychosocial health outcomes. Decisions can be improved withcareful attention to the patient, including not only her risks andrisks and benef i ts of intervention, but consideration and support ofpreferences, values, and concerns.Conf l ict of interestAuthor declares no conf l ict of interest.References[1] Chlebowski RT, Kim J, Haque R. Adherence to endocrine therapy in breastcancer adjuvant and prevention settings. Cancer Prev Res 2014;7(4):378e87.[2] Domchek SM, Friebel TM, Singer CF, et al. Association of risk-reducing surgeryin BRCA1 or BRCA2 mutation carriers with cancer risk and mortality. JAMA2010;304(9):967e75.[3] Partridge AH, Elmore JG, Saslow D, McCaskill-Stevens W, Schnitt SJ. Chal-lenges in ductal carcinoma in situ risk communication and decision-making:report from an American Cancer Society and National Cancer Instituteworkshop. CA A Cancer J Clin 2012;62(3):203e10.[4] Fallowf i eld L, Francis A, Thompson AM. Effects of standard treatments forductal carcinoma in situ-making informed choices. JAMA Oncol 2016;2(3):396e7.[5] Park TS, Hwang ES. Current trends in the management of ductal carcinoma insitu. Oncology 2016;30(12):16e24. Supplement 2.[6] Partridge A, Winer JP, Golshan M, et al. Perceptions and management ap-proaches of physicians who care for women with ductal carcinoma in situ.Clin Breast Cancer 2008;8:275e80.[7] Partridge A, Adloff K, Blood E, et al. Risk perceptions and psychosocial out-comes of women with ductal carcinoma in situ: longitudinal results from acohort study. J Natl Cancer Inst 2008;100:243e51.[8] Rakovitch E, Franssen E, Kim J, et al. A comparison of risk perception andpsychological morbidity in women with ductal carcinoma in situ and earlyinvasive breast cancer. Breast Cancer Res Treat 2003 Feb;77(3):285e93.[9] Ruddy KJ, Meyer ME, Giobbie-Hurder A, et al. Long-term risk perceptions ofwomen with ductal carcinoma in situ. Oncologist 2013;18:362e8.[10] Punglia RS, Schnitt SJ, Weeks JC. Treatment of ductal carcinoma in situ afterexcision: would a prophylactic paradigm be more appropriate? J Natl CancerInst 2013;105(20):1527e33.[11] Omer ZB, Hwang ES, Esserman LJ, Howe R, Ozanne EM. Impact of ductalcarcinoma in situ terminology on patient treatment preferences. JAMA InternMed 2013;173(19):1830e1.[12] Wickerham DL, Julian TB. Ductal carcinoma in situ: a rose by any other name.J Natl Cancer Inst 2013;105(20):1521e2.[13] Ozanne EM, Schneider KH, Soeteman D, et al. onlineDeCISion.org: a web-based decision aid for DCIS treatment. Breast Cancer Res Treat 2015;154(1):181e90.[14] O'Connor AM, Llewellyn-Thomas HA, Flood AB. Modifyimg unwarrantedvariations in health care: shared decision making using patient decision aids.Health Aff 2004:63e72.[15] Stacey D, Legare F, Col NF, et al. Decision aids for people facing health treat-ment or screening decisions. Cochrane Database Syst Rev 2014. Issue 1, www.cochranelibrary.com.[16] Elmore JG, Ganschow PS, Geller BM. Communication between patients andproviders and informed decision making. JNCI Monogr 2010;2010(41):204e9.A.H. Partridge / The Breast 34 (2017) S55eS57 S57

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