An In-Visit Decision Aid for Surgeons to Address Decision Making for Bilateral Mastectomy for Newly Diagnosed Breast Cancer Patients.

BACKGROUND: Few decision aids for newly diagnosed breast cancer patients are used by surgeons during their consultations with patients. METHODS: From 2017 to 2019, an online interactive breast cancer in-visit decision aid (BIDA) was used on 63 patients and 57 patients underwent usual care (UC). We compared knowledge, decision involvement, anxiety and distress (HADS scale), quality of life (PROMIS), fear of recurrence, body image, and patient values between BIDA and UC before surgery. A knowledge score of ≥ 57% was considered "high knowledge." RESULTS: A total of 188 patients were enrolled of which 120 (63.8%) completed all study procedures. Patient demographic characteristics and anxiety and quality of life (QOL) at baseline were similar between patients in BIDA and UC cohorts. After seeing the surgeon, patients in the BIDA group had higher composite knowledge scores compared with UC patients [n = 55 (87.3%) vs. n = 39 (68.4%) respectively, p = 0.012]. Patients in the BIDA cohort reported being asked more often their surgical preference (p = 0.013) and discussing bilateral mastectomy (BM) as an option (p = 0.048). There was a trend of less patients in the BIDA cohort undergoing BM then in the UC cohort [10 (15.9%) vs. 14 (24.6%), p = 0.49]. Anxiety and distress, QOL, fear of recurrence, and body image were not significantly different between BIDA and UC cohorts. CONCLUSIONS: A decision aid used by surgeons during their consultation was associated with higher knowledge levels, patients reporting more discussion about BM, and a trend of lower BMs. A larger study with more patients is needed to confirm this finding.

Randomised controlled trial of a repeated consultation support intervention for patients with colorectal cancer.

OBJECTIVE: UK healthcare policy for improving cancer outcomes supports participation of patients in care decisions with clinicians. Consultation Planning, Recording and Summarising (CPRS) has shown evidence of increasing patient decision self-efficacy, reducing uncertainty, and regret of decisions. This is the first trial of CPRS within the colorectal cancer population and delivered over serial medical consultations. METHODS: This randomised controlled trial compared usual care to the addition of CPRS over consecutive oncology consultations with newly diagnosed colorectal cancer (CRC) patients in Edinburgh, Scotland. The study primarily evaluated patients' perception of their decision self-efficacy, preparation for decision-making, decisional conflict, and decisional regret, with secondary measures of anxiety and depression. RESULTS: Compared with usual care, overall, the intervention group reported significantly higher decision self-efficacy (P = 0.001) and preparation for decision-making (P < 0.001) and significantly lower decisional conflict (P = 0.018) and regret (P = 0.039). The repeated intervention patients felt significantly better prepared for each consultation (P < 0.05); reported higher DSE before (P = 0.05) and after (P = 0.031) consultation one, and after consultation three (P = 0.004); and reported lower decisional conflict after consultation two (P = 0.007). Analyses comparing groups over time on decisional variables and anxiety and depression were underpowered because of attrition. CONCLUSIONS: Among colorectal cancer patients, CPRS was associated with decisional benefits before and after each consultation and 3 months after the last consultation. It appears that CPRS patients began their first medical consultation on a better trajectory but did not widen the gap over time. More research is needed on the benefits of CPRS being administered once or consecutively.

Impact of an In-visit Decision Aid on Patient Knowledge about Contralateral Prophylactic Mastectomy: A Pilot Study.

BACKGROUND: Studies have reported that breast cancer patients have limited understanding about the oncologic outcomes following contralateral prophylactic mastectomy (CPM). We hypothesized that an in-visit decision aid (DA) would be associated with higher patient knowledge about the anticipated short and long term outcomes of CPM. METHODS: We piloted a DA which used the SCOPED: (Situation, Choices, Objectives, People, Evaluation and Decision) framework. Knowledge, dichotomized as "low" (≤3 correct) versus "high" (≥4 correct), was assessed immediately after the visit by a 5 item survey. There were 97 DA patients (response rate 62.2 %) and 114 usual care (UC) patients (response rate 71.3 %). RESULTS: Patient demographic factors were similar between the two groups. Twenty-one (21.7 %) patients in the DA group underwent CPM compared with 18 (15.8 %) in the UC group (p = 0.22). Mean and median knowledge levels were significantly higher in the DA group compared with the UC group for patients of all ages, tumor stage, race, family history, anxiety levels, worry about CBC, and surgery type. Eighty-six (78.9 %) of UC versus 35 (37.9 %) DA patients had low knowledge. Of patients who underwent CPM, 15 (83.3 %) in the UC cohort versus 5 (25.0 %) of DA patients had "low" knowledge. CONCLUSIONS: Knowledge was higher in the DA group. The UC group had approximately three times the number of patients of the DA group who were at risk for making a poorly informed decision to have CPM. Future studies should assess the impact of increased knowledge on overall CPM rates.

Coaching patients in the use of decision and communication aids: RE-AIM evaluation of a patient support program.

BACKGROUND: Decision aids educate patients about treatment options and outcomes. Communication aids include question lists, consultation summaries, and audio-recordings. In efficacy studies, decision aids increased patient knowledge, while communication aids increased patient question-asking and information recall. Starting in 2004, we trained successive cohorts of post-baccalaureate, pre-medical interns to coach patients in the use of decision and communication aids at our university-based breast cancer clinic. METHODS: From July 2005 through June 2012, we used the RE-AIM framework to measure Reach, Effectiveness, Adoption, Implementation and Maintenance of our interventions. RESULTS: 1. Reach: Over the study period, our program sent a total of 5,153 decision aids and directly administered 2,004 communication aids. In the most recent program year (2012), out of 1,524 eligible patient appointments, we successfully contacted 1,212 (80%); coached 1,110 (73%) in the self-administered use of decision and communication aids; sent 958 (63%) decision aids; and directly administered communication aids for 419 (27%) patients. In a 2010 survey, coached patients reported self-administering one or more communication aids in 81% of visits 2. Effectiveness: In our pre-post comparisons, decision aids were associated with increased patient knowledge and decreased decisional conflict. Communication aids were associated with increased self-efficacy and number of questions; and with high ratings of patient preparedness and satisfaction 3. Adoption: Among visitors sent decision aids, 82% of survey respondents reviewed some or all; among those administered communication aids, 86% reviewed one or more after the visit 4. IMPLEMENTATION: Through continuous quality adaptations, we increased the proportion of available staff time used for patient support (i.e. exploitation of workforce capacity) from 29% in 2005 to 84% in 2012 5. Maintenance: The main barrier to sustainability was the cost of paid intern labor. We addressed this by testing a service learning model in which student interns work as program coaches in exchange for academic credit rather than salary. The feasibility test succeeded, and we are now expanding the use of unpaid interns. CONCLUSION: We have sustained a clinic-wide implementation of decision and communication aids through a novel staffing model that uses paid and unpaid student interns as coaches.

Germline testing for veterans with advanced prostate cancer: concerns about service-connected benefits.

To better understand veterans' decisions about germline testing, we conducted a single-site, qualitative study of 32 veterans with advanced prostate cancer. Seven days after oncologist-patient discussions about germline testing, we conducted semistructured interviews with patients to explore their decision-making process using an interview guide. Four of 14 veterans with service-connected disability benefits for prostate cancer declined germline testing for fear of losing benefits because their livelihood depended on these benefits. All 18 veterans without service-connected benefits agreed to testing. Veterans declining germline testing based on this concern can lead to suboptimal cancer care because targeted treatments that could improve their outcomes may go unrecognized. Our findings contributed to new language in the Veterans Benefits Administration Compensation and Pension Manual clarifying that genetic testing showing hereditary predisposition is insufficient to deny service-connected benefits for conditions presumed to be caused by military exposures. Clinicians should communicate this protection when counseling veterans about genetic testing.

Coaching and guidance with patient decision aids: A review of theoretical and empirical evidence.

BACKGROUND: Coaching and guidance are structured approaches that can be used within or alongside patient decision aids (PtDAs) to facilitate the process of decision making. Coaching is provided by an individual, and guidance is embedded within the decision support materials. The purpose of this paper is to: a) present updated definitions of the concepts "coaching" and "guidance"; b) present an updated summary of current theoretical and empirical insights into the roles played by coaching/guidance in the context of PtDAs; and c) highlight emerging issues and research opportunities in this aspect of PtDA design. METHODS: We identified literature published since 2003 on shared decision making theoretical frameworks inclusive of coaching or guidance. We also conducted a sub-analysis of randomized controlled trials included in the 2011 Cochrane Collaboration Review of PtDAs with search results updated to December 2010. The sub-analysis was conducted on the characteristics of coaching and/or guidance included in any trial of PtDAs and trials that allowed the impact of coaching and/or guidance with PtDA to be compared to another intervention or usual care. RESULTS: Theoretical evidence continues to justify the use of coaching and/or guidance to better support patients in the process of thinking about a decision and in communicating their values/preferences with others. In 98 randomized controlled trials of PtDAs, 11 trials (11.2%) included coaching and 63 trials (64.3%) provided guidance. Compared to usual care, coaching provided alongside a PtDA improved knowledge and decreased mean costs. The impact on some other outcomes (e.g., participation in decision making, satisfaction, option chosen) was more variable, with some trials showing positive effects and other trials reporting no differences. For values-choice agreement, decisional conflict, adherence, and anxiety there were no differences between groups. None of these outcomes were worse when patients were exposed to decision coaching alongside a PtDA. No trials evaluated the effect of guidance provided within PtDAs. CONCLUSIONS: Theoretical evidence continues to justify the use of coaching and/or guidance to better support patients to participate in decision making. However, there are few randomized controlled trials that have compared the effectiveness of coaching used alongside PtDAs to PtDAs without coaching, and no trials have compared the PtDAs with guidance to those without guidance.

The emerging case for shared decision making in orthopaedics.

The Institute of Medicine outlined a standard for patient-centered care, which has become the centerpiece of healthcare reform in the United States. Shared decision-making interventions, which include decision and communication aids, are formal embodiment of this philosophy. Although the concept of shared decision making has been shown to be an effective tool, and its relevance to orthopaedic medicine has been well documented, it has not been widely adopted by orthopaedic surgeons. It is helpful to examine the benefits of shared decision making, along with incentives to encourage adoption and implementation of this important philosophy.

Feeling known and informed: Serial qualitative interviews evaluating a consultation support intervention for patients with high-grade glioma.

OBJECTIVE: Interventions to support patients' engagement in shared decision making (SDM) are lacking within high-grade glioma (HGG) healthcare. Consultation Planning, Recording and Summarising (CPRS) has shown evidence of increasing patient decision self-efficacy, reducing uncertainty, and regret of decisions. This is the first study of CPRS within a HGG population and delivered over serial medical consultations. METHOD: A one-arm prospective qualitative longitudinal design was used to evaluate the CPRS intervention and evaluated with participants at sequential clinic appointments depending on their care, in Edinburgh, Scotland. We report on serial semi structured interviews of 16 patients and their partners. RESULTS: Consultation planning before the consultation supported patients to feel known by strengthening the patient voice within the consultation. It prepared patients to actively participate in the consultation, despite the distressing nature of the content. Recording and summarising supported patients to understand their situation. The provision of a consultation record enabled accurate recall, a paced uptake of information and supported the family to feel fully informed. Ultimately, patients understood why decisions were being made rather than being part of making decisions. CONCLUSIONS: The CPRS intervention helped patients to understand and to feel known by increasing patient capacity for communication in the consultation, with support before, during, and after the consultation. The intervention focused on preparing patients for SDM but patients did not perceive that they had meaningful choices to make. Further research could look at the inclusion of patient decision aids to support this process.

Adoption, acceptability, and accuracy of an online clinical trial matching website for breast cancer.

BACKGROUND: Less than 5% of breast cancer patients participate in clinical trials. To increase patients' awareness and access to trials, we created BreastCancerTrials.org, a clinical trial matching website. BreastCancerTrials.org matched patients to trials based on their self-reported breast cancer history. It also provided a messaging platform through which patients could self-refer themselves to participating research sites. OBJECTIVE: To assess adoption by research sites, acceptability to patients, and patients' accuracy in providing information to BreastCancerTrials.org. METHODS: We approached 13 research sites in Northern California to list their trials on BreastCancerTrials.org. For adoption, we examined the willingness of contacted research sites to collaborate with BreastCancerTrials.org. For acceptability, we analyzed usage statistics of visitors who completed the BreastCancerTrials.org health history questionnaire in the first 14 months after launch and surveyed users who visited the website during its first year about their experience. For accuracy, we compared the self-reported health history of 20 patients against their medical records. The health history questionnaire was divided into four sections: About Me, personal information including date of birth and sex; My Health as of Today, current status including cancer stage, menopausal status, and sites with evidence of disease; My Cancer, diagnostic information such as hormone and human epidermal growth factor receptor 2 status; and My Treatment, an itemized record of past treatment including responses to therapy. RESULTS: A total of 12 sites contributed 55 trials. Regarding acceptability, 733 visitors registered on the website; 428 reported their health history; and 407 matched to at least one trial. Of 375 patients who were sent a survey, 75 responded (20%); 23 of the 75 (31%) contacted a research site, 12 of the 23 (52%) were eligible for a trial, and 5 of the 12 (42%) reported enrolling. As for accuracy, 20 clinic visitors reported 1456 health history items, 1324 of which matched their clinic record (90.93%). CONCLUSIONS: BreastCancerTrials.org was adopted by research sites. Patients found it acceptable and were able to provide accurate information for trial matching. Based on our findings, we launched an upgraded version of BreastCancerTrials.org as a national service in October 2008.

Contralateral prophylactic mastectomy: A narrative review of the evidence and acceptability.

The uptake of contralateral prophylactic mastectomy (CPM) has increased steadily over the last twenty years in women of all age groups and breast cancer stages. Since contralateral breast cancer is relatively rare and the breast cancer guidelines only recommend CPM in a small subset of patients with breast cancer, the drivers of this trend are unknown. This review aims to evaluate the evidence for and acceptability of CPM, data on patient rationales for choosing CPM, and some of the factors that might impact patient preferences. Based on the evidence, future recommendations will be provided. First, data on contralateral breast cancer risk and CPM rates and trends are addressed. After that, the evidence is structured around four main patient rationales for CPM formulated as questions that patients might ask their surgeon: Will CPM reduce mortality risk? Will CPM reduce the risk of contralateral breast cancer? Can I avoid future screening with CPM? Will I have better breast symmetry after CPM? Also, three different guidelines regarding CPM will be reviewed. Studies indicate a large gap between patient preferences for radical risk reduction with CPM and the current approaches recommended by important guidelines. We suggest a strategy including shared decision-making to enhance surgeons' communication with patients about contralateral breast cancer and treatment options, to empower patients in order to optimize the use of CPM incorporating accurate risk assessment and individual patient preferences.

Pre-Appointment Nurse Navigation: Patient-Centered Findings From a Survey of Patients With Breast Cancer.

BACKGROUND: Research indicates that nurse navigators can play key roles in promoting empowerment for patients with cancer through advocacy, educational support, resource navigation, and psychosocial care. OBJECTIVES: This study attempted to elucidate the efficacy of nurse navigation in patient knowledge, care coordination, and well-being before a breast oncology appointment. METHODS: Staff provided a nine-question survey to 50 newly referred patients before their initial appointment. After survey completion, patients had the option to participate in an open-ended interview about their experience. FINDINGS: A greater proportion of patients with initial nurse navigation than those without felt informed before their appointment and thought that their care was effectively coordinated. Although some patients without nurse navigation experienced delays and confusion in scheduling their appointment, no patients with nurse navigators reported such issues.

Development and pilot of an online, personalized risk assessment tool for a breast cancer precision medicine trial.

Breast cancer risk reduction has been validated by large-scale clinical trials, but uptake remains low. A risk communication tool could provide personalized risk-reduction information for high-risk women. A low-literacy-friendly, visual, and personalized tool was designed as part of the Women Informed to Screen Depending On Measures of risk (WISDOM) study. The tool integrates genetic, polygenic, and lifestyle factors, and quantifies the risk-reduction from undertaking medication and lifestyle interventions. The development and design process utilized feedback from clinicians, decision-making scientists, software engineers, and patient advocates. We piloted the tool with 17 study participants, collecting quantitative and qualitative feedback. Overall, participants felt they better understood their personalized breast cancer risk, were motivated to reduce their risk, and considered lifestyle interventions. The tool will be used to evaluate whether risk-based screening leads to more informed decisions and higher uptake of risk-reduction interventions among those most likely to benefit.

Evaluation of a National Comprehensive Cancer Network Guidelines-Based Decision Support Tool in Patients With Non-Small Cell Lung Cancer: A Nonrandomized Clinical Trial.

Importance: The association of guideline-based decision support with the quality of care in patients with non-small cell lung cancer (NSCLC) is not known. Objective: To evaluate the association of exposure to the National Comprehensive Cancer Center (NCCN) guidelines with guideline-concordant care and patients' decisional conflict. Design, Setting, and Participants: A nonrandomized clinical trial, conducted at a tertiary care academic institution, enrolled patients from February 23, 2015, to September 28, 2017. Data analysis was conducted from July 19, 2019, to April 22, 2020. A cohort of 76 patients with NSCLC seen at diagnosis or disease progression and a retrospective cohort of 157 patients treated before the trial were included. Adherence to 6 NCCN recommendations were evaluated: (1) smoking cessation counseling, (2) adjuvant chemotherapy for patients with stage IB to IIB NSCLC after surgery, (3) pathologic mediastinal staging in patients with stage III NSCLC before surgery, (4) pathologic mediastinal staging in patients with stage III NSCLC before nonsurgical treatment, (5) definitive chemoradiotherapy for patients with stage III NSCLC not having surgery, and (6) molecular testing for epidermal growth factor receptor and anaplastic lymphoma kinase alterations for patients with stage IV NSCLC. Subgroup analysis was conducted to compare the rates of guideline concordance between the prospective and retrospective cohorts. Secondary end points included decisional conflict and satisfaction. Interventions: An online tool customizing the NCCN guidelines to patients' clinical and pathologic features was used during consultation, facilitated by a trained coordinator. Main Outcomes and Measures: Concordance of practice with 6 NCCN treatment recommendations on NSCLC and patients' decisional conflict. Results: Of the 76 patients with NSCLC, 44 were men (57.9%), median age at diagnosis was 68 years (interquartile range [IQR], 41-87 years), and 59 patients (77.6%) had adenocarcinoma. In the retrospective cohort, 91 of 157 patients (58.0%) were men, median age at diagnosis was 66 years (IQR, 61-65 years), and 105 patients (66.9%) had adenocarcinoma. After the intervention, patients received more smoking cessation counseling (4 of 5 [80.0%] vs 1 of 24 [4.2%], P < .001) and less adjuvant chemotherapy (0 of 7 vs 7 of 11 [63.6%]; P = .012). There was no significant change in mutation testing of non-squamous cell stage IV disease (20 of 20 [100%] vs 48 of 57 [84.2%]; P = .10). There was no significant change in pathologic mediastinal staging or initial chemoradiotherapy for patients with stage III disease. After consultation with the tool, decisional conflict scores improved by a median of 20 points (IQR, 3-34; P < .001). Conclusions and Relevance: The findings of this study suggest that exposure to the NCCN guidelines is associated with increased guideline-concordant care for 2 of 6 preselected recommendations and improvement in decisional conflict. Trial Registration: ClinicalTrials.gov Identifier: NCT03982459.

Hypertension is an independent predictor of survival disparity between African-American and white breast cancer patients.

The objective of this study was to determine whether comorbidity, or pre-existing conditions, can account for some of the disparity in survival between African-American and white breast cancer patients. A historical cohort study was conducted of 416 African-American and 838 white women diagnosed with breast cancer between 1973 and 1986, and followed through 1999 in the Kaiser Permanente Northern California Medical Care Program. Information on comorbidity, tumor characteristics and breast cancer treatment was obtained from medical records, and Surveillance, Epidemiology and End Results, Northern California Cancer Center Registry. Associations between comorbidity and survival were analyzed with multiple Cox proportional hazards regression. Over a mean follow-up of 9 years, African Americans had higher overall crude mortality than whites: 165 (39.7%) versus 279 (33.3%), respectively. When age, race, tumor characteristics and breast cancer treatment were controlled, the presence of hypertension was associated with all cause survival [hazard ratio (HR) = 1.33, 95% confidence intervals (CI) 1.07-1.67] and it accounted for 30% of racial disparity in this outcome. Hypertension-augmented Charlson Comorbidity Index was a significant predictor of survival from all causes (HR = 1.32, 95%CI 1.18-1.49), competing causes (HR = 1.52, 95%CI 1.32-1.76) and breast cancer specific causes (HR = 1.18, 95%CI 1.03-1.35). In conclusion, hypertension has prognostic significance in relation to survival disparity between African-American and white breast cancer patients. If our findings are replicated in contemporary cohorts, it may be necessary to include hypertension in the Charlson Comorbidity Index and other comorbidity measures.

Is there shared decision making when the provider makes a recommendation?

OBJECTIVE: To compare the amount of shared decision making in breast cancer surgery interactions when providers do and do not make a treatment recommendation. METHODS: We surveyed breast cancer survivors who were eligible for mastectomy and lumpectomy. Patients reported whether the provider made a recommendation and the recommendation given. They completed items about their interaction including discussion of options, pros, cons, and treatment preference. A total involvement score was calculated with higher scores indicating more shared decision making. RESULTS: Most patients (85%) reported that their provider made a recommendation. Patients who did not receive a recommendation had higher involvement scores compared to those who did (52% vs. 39.1%, p=0.004). Type of recommendation was associated with involvement. Patients given different recommendations had the highest total involvement scores followed by those who received mastectomy and lumpectomy recommendations (65.5% vs. 42.5% vs. 33.2%, respectively, p<0.001). CONCLUSION: Providers were less likely to present a balanced view of the options when they gave a recommendation for surgery. Patients who received a recommendation for lumpectomy had the lowest involvement score. PRACTICE IMPLICATIONS: Providers need to discuss both mastectomy and lumpectomy and elicit patients' goals and treatment preferences regardless of whether or not a recommendation is given.

Evaluation of question-listing at the Cancer Support Community.

The Cancer Support Community (CSC) provides psychosocial support to people facing cancer in community settings. The purpose of this study was to evaluate the compatibility, effectiveness, and fidelity of the Situation-Choices-Objectives-People-Evaluation-Decisions (SCOPED) question-listing intervention at three CSC sites. Between August 2008 and August 2011, the Program Director at each CSC site implemented question-listing, while measuring patient distress, anxiety, and self-efficacy before and after each intervention. We analyzed the quantitative results using unadjusted statistical tests and reviewed qualitative comments by patients and the case notes of Program Directors to assess compatibility and fidelity. Program Directors implemented question-listing with 77 blood cancer patients. Patients reported decreased distress (p = 0.009) and anxiety (p = 0.005) and increased self-efficacy (p < 0.001). Patients and Program Directors endorsed the intervention as compatible with CSC's mission and approach and feasible to implement with high fidelity. CSC effectively translated SCOPED question-listing into practice in the context of its community-based psychosocial support services at three sites.

Decision making about surgery for early-stage breast cancer.

BACKGROUND: Practice variation in breast cancer surgery has raised concerns about the quality of treatment decisions. We sought to evaluate the quality of decisions about surgery for early-stage breast cancer by measuring patient knowledge, concordance between goals and treatments, and involvement in decisions. STUDY DESIGN: A mailed survey of stage I/II breast cancer survivors was conducted at 4 sites. The Decision Quality Instrument measured knowledge, goals, and involvement in decisions. A multivariable logistic regression model of treatment was developed. The model-predicted probability of mastectomy was compared with treatment received for each patient. Concordance was defined as having mastectomy and predicted probability >0.5 or partial mastectomy and predicted probability <0.5. Frequency of discussion about partial mastectomy was compared with discussion about mastectomy using chi-square tests. RESULTS: Four hundred and forty patients participated (59% response rate). Mean overall knowledge was 52.7%; 45.9% knew that local recurrence risk is higher after breast conservation and 55.7% knew that survival is equivalent for the 2 options. Most participants (89.0%) had treatment concordant with their goals. Participants preferring mastectomy had lower concordance (80.5%) than those preferring partial mastectomy (92.6%; p = 0.001). Participants reported more frequent discussion of partial mastectomy and its advantages than of mastectomy, and 48.6% reported being asked their preference. CONCLUSIONS: Breast cancer survivors had major knowledge deficits, and those preferring mastectomy were less likely to have treatment concordant with goals. Patients perceived that discussions focused on partial mastectomy, and many were not asked their preference. Improvements in the quality of decisions about breast cancer surgery are needed.

Are patients making high-quality decisions about breast reconstruction after mastectomy? [outcomes article].

BACKGROUND: Variation in rates of breast reconstruction after mastectomy has raised concerns about the quality of decisions about reconstruction. The authors sought to evaluate patient decision making about reconstruction, using a validated measure of knowledge and preferences related to reconstruction. METHODS: A cross-sectional survey of early-stage breast cancer survivors from four university medical centers was conducted. The survey included measures of knowledge about specific reconstruction facts, personal goals and concerns, and involvement in decision making. A multivariable linear regression model of characteristics associated with knowledge and a logistic regression model of factors associated with having reconstruction were developed. RESULTS: A total of 84 patients participated (59 percent response rate). Participants answered 37.9 percent of knowledge questions correctly. Higher education (beta, 15 percent; p = 0.003) and having reconstruction (beta, 21 percent; p < 0.0001) were associated with higher knowledge. The goals "use your own tissue to make a breast" (odds ratio, 1.53; 95 percent CI, 1.15, 2.05) and "wake up after mastectomy with reconstruction underway" (odds ratio, 1.66; 95 percent CI, 1.30, 2.12) were associated with reconstruction. The goal "avoid putting foreign material in your body" was associated with no reconstruction (odds ratio, 0.64; 95 percent CI, 0.48, 0.86). Most patients reported they mainly made the decision or made the decision with the doctor equally (93 percent; 95 percent CI, 85 to 97 percent) and that their degree of involvement was about right (85 percent; 95 percent CI, 75 to 91 percent). CONCLUSIONS: Women treated with mastectomy in this study were not well-informed about breast reconstruction. Treatments were associated with patients' goals and concerns, however, and patients were highly involved in their decisions. Knowledge deficits suggest that breast cancer patients would benefit from interventions to support their decision making.