Scoping review of experiences of sexual minority women treated for breast cancer.

PURPOSE: To summarize and critique research on the experiences and outcomes of sexual minority women (SMW) treated with surgery for breast cancer through systematic literature review. METHODS: A comprehensive literature search identified studies from the last 20 years addressing surgical experiences and outcomes of SMW breast cancer survivors. Authors performed a quality assessment and thematic content analysis to identify emergent themes. RESULTS: The search yielded 121 records; eight qualitative studies were included in the final critical appraisal. Quality scores for included studies ranged 6-8 out of 10. Experiences and outcomes of SMW breast cancer survivors were organized by major themes: 1) Individual, 2) Interpersonal, 3) Healthcare System, and 4) Sociocultural and Discursive. CONCLUSIONS: SMW breast cancer survivors have unique experiences of treatment access, decision-making, and quality of life in survivorship. SMW breast cancer survivors' personal values, preferences, and support network are critical considerations for researchers and clinicians.

Patient-driven decisions and perceptions of the 'safest possible choice': insights from patient-provider conversations about how some breast cancer patients choose contralateral prophylactic mastectomy.

OBJECTIVE: Observe patient-clinician communication to gain insight about the reasons underlying the choice of patients with unilateral breast cancer to undergo contralateral prophylactic mastectomy (CPM), despite lack of survival benefit, risk of harms, and cautions expressed by surgical guidelines and clinicians. METHODS & MEASURES: WORDS is a prospective study that explored patient-clinician communication and patient decision making. Participants recorded clinical visits through a downloadable mobile application. We analyzed 44 recordings from 22 patients: 9 who chose CPM, 8 who considered CPM but decided against it, and 5 who never considered CPM. We used abductive analysis combined with constructivist grounded theory methods. RESULTS: Decisions to undergo CPM are patient-driven and motivated by perceptions that CPM is the most aggressive, and therefore safest, treatment option available. These decisions are shaped not primarily by the content of conversations with clinicians, but by the history of cancer in patients' families, their own first-hand experiences with cancers among loved ones, fear for their children, and anxiety about cancer recurrence. CONCLUSION: The perception that CPM is the safest, most aggressive option strongly influences patients, despite scientific evidence to the contrary. Future efforts to address high CPM rates should focus on patient-driven decision making and cancer-related fears.

A Video Intervention to Improve Patient Understanding of Tumor Genomic Testing in Patients with Cancer.

Background: Tumor genomic testing (TGT) has become standard-of-care for most patients with advanced/metastatic cancer. Despite established guidelines, patient education prior to TGT is variable or frequently omitted. The purpose of this study was to evaluate the impact of a concise (3-4 minute) video for patient education prior to TGT. Methods: Based on a quality improvement cycle, an animated video was created to be applicable to any cancer type, incorporating culturally diverse images, available in English and Spanish. Patients undergoing standard-of care TGT were enrolled at a tertiary academic institution and completed validated survey instruments immediately prior to video viewing (T1) and immediately post-viewing (T2). Instruments included: 1) 10-question objective genomic knowledge/understanding; 2) 10-question video message-specific knowledge/recall; 3) 11-question Trust in Physician/Provider; 4) attitudes regarding TGT. The primary objective was change in outcomes from before to after the video was assessed with Wilcoxon signed rank test. Results: From April 2022 to May 2023, a total of 150 participants were enrolled (MBC n=53, LC n=38, OC n=59). For the primary endpoint, there was a significant increase in video message-specific knowledge (median 10 point increase; p<0.0001) with no significant change in genomic knowledge/understanding (p=0.89) or Trust in Physician/Provider (p=0.59). Results for five questions significantly improved, including the likelihood of TGT impact on treatment decision, incidental germline findings, and cost of testing. Improvement in video message-specific knowledge was consistent across demographic groups, including age, income, and education. Individuals with less educational attainment had had greater improvement from before to after video viewing. Conclusions: A concise, 3-4 minute, broadly applicable video incorporating culturally diverse images administered prior to TGT significantly improved video message-specific knowledge across all demographic groups. This resource is publicly available at http://www.tumor-testing.com, with a goal to efficiently educate and empower patients regarding TGT while addressing guidelines within the flow of clinical practice. Clinical Trial Registration: ClinicalTrials.gov NCT05215769.

Current Trends in Mortality Attributable to Racial or Ethnic Disparities in Post-Surgical Population in The United States: A Population-Based Study.

Background: No study has contextualized the excess mortality attributable to racial and ethnic disparities in surgical outcomes. Further, not much effort has been made to quantify the effort needed to eliminate these disparities. Objective: We examined the current trends in mortality attributable to racial or ethnic disparities in the US postsurgical population. We then identified the target for mortality reduction that would be necessary to eliminate these disparities by 2030. Methods: We performed a population-based study of 1,512,974 high-risk surgical procedures among adults (18-64 years) performed across US hospitals between 2000 and 2020. Results: Between 2000 and 2020, the risk-adjusted mortality rates declined for all groups. Nonetheless, Black patients were more likely to die following surgery (adjusted relative risk 1.42; 95% CI, 1.39-1.46) driven by higher Black mortality in the northeast (1.60; 95% CI, 1.52-1.68), as well as the West (1.53; 95% CI, 1.43-1.62). Similarly, mortality risk remained consistently higher for Hispanics compared with White patients (1.21; 95% CI, 1.19-1.24), driven by higher mortality in the West (1.26; 95% CI, 1.21-1.31). Overall, 8364 fewer deaths are required for Black patients to experience mortality on the same scale as White patients. Similar figures for Hispanic patients are 4388. To eliminate the disparity between Black and White patients by 2030, we need a 2.7% annualized reduction in the projected mortality among Black patients. For Hispanics, the annualized reduction needed is 0.8%. Conclusions: Our data provides a framework for incorporating population and health systems measures for eliminating disparity in surgical mortality within the next decade.

Patient Preferences for Postmastectomy Breast Reconstruction.

Importance: Up to 40% of women experience dissatisfaction after breast reconstruction due to unexpected outcomes that are poorly aligned with personal preferences. Identifying what attributes patients value when considering surgery could improve shared decision-making. Adaptive choice-based conjoint (ACBC) analysis can elicit individual-level treatment preferences. Objectives: To identify which attributes of breast reconstruction are most important to women considering surgery and to describe how these attributes differ by those who prefer flap vs implant reconstruction. Design, Setting, and Participants: This web-based, cross-sectional study was conducted from March 1, 2022, to January 31, 2023, at Duke University and between June 1 and December 31, 2022, through the Love Research Army with ACBC analysis. Participants were 105 women at Duke University with a new diagnosis of or genetic predisposition to breast cancer who were considering mastectomy with reconstruction and 301 women with a history of breast cancer or a genetic predisposition as identified through the Love Research Army registry. Main Outcomes and Measures: Relative importance scores, part-worth utility values, and maximum acceptable risks were estimated. Results: Overall, 406 women (105 from Duke University [mean (SD) age, 46.3 (10.5) years] and 301 from the Love Research Army registry [mean (SD) age, 59.2 (11.9) years]) participated. The attribute considered most important was the risk of abdominal morbidity (mean [SD] relative importance [RI], 28% [11%]), followed by chance of major complications (RI, 25% [10%]), number of additional operations (RI, 23% [12%]), appearance of the breasts (RI, 13% [12%]), and recovery time (RI, 11% [7%]). Most participants (344 [85%]) preferred implant-based reconstruction; these participants cared most about abdominal morbidity (mean [SD] RI, 30% [11%]), followed by the risk of complications (mean [SD], RI, 26% [11%]) and additional operations (mean [SD] RI, 21% [12%]). In contrast, participants who preferred flap reconstruction cared most about additional operations (mean [SD] RI, 31% [15%]), appearance of the breasts (mean [SD] RI, 27% [16%]), and risk of complications (mean [SD] RI, 18% [6%]). Factors independently associated with choosing flap reconstruction included being married (odds ratio [OR], 2.30 [95% CI, 1.04-5.08]; P = .04) and higher educational level (college education; OR, 2.43 [95% CI, 1.01-5.86]; P = .048), while having an income level of greater than $75 000 was associated with a decreased likelihood of choosing the flap profile (OR, 0.45 [95% CI, 0.21-0.97]; P = .01). Respondents who preferred flap appearance were willing to accept a mean (SD) increase of 14.9% (2.2%) chance of abdominal morbidity (n = 113) or 6.4% (4.8%) chance of complications (n = 115). Conclusions and Relevance: This study provides information on how women value different aspects of their care when making decisions for breast reconstruction. Future studies should assess how decision aids that elicit individual-level preferences can help tailor patient-physician discussions to focus preoperative counseling on factors that matter most to each patient and ultimately improve patient-centered care.

Turning the Page on Breast Cancer in Ohio: Lessons learned from implementing a multilevel intervention to reduce breast cancer mortality among Black women.

BACKGROUND: Turning the Page on Breast Cancer (TPBC) uses a multilevel approach to reduce breast cancer (BC) mortality among Black women. TPBC intervenes by (1) improving health care facilities' ability to conduct effective BC screening, follow-up, and treatment; (2) involving community-based organizations; and (3) providing education and personal risk information through a culturally relevant website. Ohio has among the worst BC mortality rates in the United States for Black women. TPBC is in its third year of providing targeted interventions in 12 Ohio counties with particularly high BC rates among Black women. METHODS: TPBC enrolls health care facilities, collects organizational and patient data, and conducts key informant interviews to inform the provision of appropriate evidence-based interventions. TPBC engages Black communities through community-based organizations and social media advertising. The TPBC website offers BC information, connects Black women to community BC resources, and provides access to a risk-assessment tool. RESULTS: TPBC has provided tailored information packets, evidence-based interventions, and systematic support for improving the tracking and follow-up of breast health care among patients in 10 clinical partnerships. The project has provided education at community events monthly since mid-2021. The TPBC website (http://endbreastcancerohio.org) is promoted through social media (primarily Facebook) and community events to reach Black women aged 25-70 years. To date, 4108 unique users have visited the website, of whom 15.9% completed the risk assessment. CONCLUSIONS: Novel strategies are needed to address persistent disparities in BC outcomes among Black women. TPBC demonstrates the potential effectiveness of multiple methods of community-based, clinic-based, and web-based engagement. PLAIN LANGUAGE SUMMARY: Turning the Page on Breast Cancer (TPBC) aims to reduce breast cancer mortality among Black women in Ohio by conducting multilevel, community-engaged interventions in 12 counties. Women are provided risk information and education at virtual and in-person community events and through a community-friendly website that was launched in November 2020. Almost 4000 women have visited the website, which offers community-targeted information, urges screening for individuals at elevated risk, and offers access to patient navigation services; 655 users have used a breast cancer risk-assessment tool on the site. Community-based organizations conduct educational efforts. TPBC partners with health care facilities, which are taught to improve their ability to conduct effective breast cancer screening, follow-up, and treatment. So far, TPBC has provided educational information, evidence-based intervention lists, tailored information packets, and ongoing quarterly support to partners in 10 counties. Evaluation will focus on aggregated data for screening and genetic testing referral at the clinic level.

Game Changers: Plastic and Reconstructive Surgery Innovations of the Last 100 Years.

Background: Innovation is an essential aspect of plastic and reconstructive surgery (PRS), whether it involves improving current processes or implementing radical change that disrupts the status quo. Collaborating and sharing innovations help advance the field of PRS as a whole. Methods: An anonymous survey was administered to members of the American Association of Plastic Surgeons on their opinions of the top five innovations in PRS of the last 100 years. Results: A list of 69 unique innovations were compiled; the top five innovations overall were microsurgery, myocutaneous flaps, craniofacial surgery, negative pressure wound therapy, and organ transplantation. This list was reviewed by the American Association of Plastic Surgeons Technology Committee, and expanded to 100 unique innovations. Conclusions: We discuss why the above innovations were essential to the development of PRS, as well as the unique factors that can make a new product or procedure into something that remodels the field of PRS.

Contralateral Prophylactic Mastectomy Decision-Making: The Partners' Perspective.

BACKGROUND: The rate of contralateral prophylactic mastectomy (CPM) continues to rise despite no improvement in survival, an increased risk of surgical complications, and negative effects on quality of life. This study explored the experiences of the partners of women who undergo CPM. METHODS: This study was part of an investigation into the factors motivating women with early-stage unilateral breast cancer and low genetic risk to opt for contralateral prophylactic mastectomy (CPM). Participating women were asked for permission to invite their partners to take part in interviews. In-depth interviews with partners were conducted using a semi-structured topic guide. A thematic analysis of the data was performed RESULTS: Of 35 partners, all men, 15 agreed to be interviewed. Most perceived their role to be strong and logical. Some hoped their wives would choose a bilateral mastectomy. All felt strongly that the final decision was up to their partners. The partners often framed the decision for CPM as one of life or death. Thus, any aesthetic effects were unimportant by comparison. The male partners had difficulty grasping the physical and emotional changes inherent in mastectomy, which made communicating about sexuality and intimacy very challenging for the couples. In the early recovery period, some noted the stress of managing home life. CONCLUSIONS: The experiences of the male partners provide insight into how couples navigate complex treatment decision-making, both together and separately. There may be a benefit to including partners in pre- and post-surgical counseling to mitigate miscommunication regarding the expected oncologic and emotional outcomes related to CPM.

Can we do better at measuring patient-reported outcomes after cranioplasty? A systematic review.

Measuring quality of life (QOL) after cranioplasty is increasingly evident as a necessary component of patient-centered care. For data to be useful in clinical decision-making and approval of new therapies, studies must utilize valid and reliable instruments. Our objective was to critically appraise studies evaluating QOL in adult cranioplasty patients and determine validity and relevance of the patient-reported outcome measures (PROMs) used. Electronic databases of PubMed, Embase, CINAHL, and PsychINFO were used to identify PROMs measuring QOL in adult patients with cranioplasty. The methodological approach, cranioplasty outcomes, and domains measured by the PROMs were extracted and summarized descriptively. A content analysis of the identified PROMs was completed to identify the concepts measured. From 2236 articles identified, 17 articles containing eight QOL PROMs met the inclusion criteria. None of the PROMs was specifically validated or developed for adults undergoing cranioplasty. The QOL domains included physical health, psychological health, social health, and general QOL. These four domains encompassed 216 total items among the PROMs. Appearance was only assessed in two PROMs. To our knowledge, there are currently no validated PROMs that comprehensively measure appearance, facial function, and adverse effects in adults undergoing cranioplasty. There is an urgent need to develop PROMs to measure QOL outcomes rigorously and comprehensively in this patient population to inform clinical care, research, and quality improvement initiatives. Findings from this systematic review will be used to derive an outcome instrument containing important concepts related to QOL in patients who undergo cranioplasty.

Patient-Reported Outcomes of Breast Reconstruction: Does the Quality of Decisions Matter?

BACKGROUND: Little is known about how the quality of decisions influences patient-reported outcomes (PROs). We hypothesized that higher decision quality for breast reconstruction would be independently associated with better PROs. METHODS: We conducted a prospective cohort study of patients undergoing mastectomy with or without reconstruction. Patients were enrolled before surgery and followed for 18 months. We used BREAST-Q scales to measure PROs and linear regression models to explore the relationship between decision quality (based on knowledge and preference concordance) and PROs. Final models were adjusted for baseline BREAST-Q score, radiation, chemotherapy, and major complications. RESULTS: The cohort included 101 patients who completed baseline and 18-month surveys. Breast reconstruction was independently associated with higher satisfaction with breasts (ß = 20.2, p = 0.0002), psychosocial well-being (ß = 14.4, p = 0.006), and sexual well-being (ß = 15.7, p = 0.007), but not physical well-being. Patients who made a high-quality decision had similar PROs as patients who did not. Among patients undergoing mastectomy with reconstruction, higher decision quality was associated with lower psychosocial well-being (ß = -14.2, p = 0.01). CONCLUSIONS: Breast reconstruction was associated with better PROs in some but not all domains. Overall, making a high-quality decision was not associated with better PROs. However, patients who did not have reconstruction had a trend toward better well-being after making a high-quality decision, whereas patients who did have reconstruction had poorer well-being after making a high-quality decision. Additional research on the relationship between decision quality and PROs is needed.

Operating on Anxiety: Negative Affect toward Breast Cancer and Choosing Contralateral Prophylactic Mastectomy.

BACKGROUND: Rates of contralateral prophylactic mastectomy (CPM)-removal of the healthy breast following breast cancer diagnosis-have increased, particularly among women for whom CPM provides no survival benefit. Affective (i.e., emotional) decision making is often blamed for this increase. We studied whether greater negative breast cancer affect could motivate uptake of CPM through increased cancer risk perceptions and biased treatment evaluations. METHODS: We randomly assigned healthy women with average breast-cancer risk (N = 1030; Mage = 44.14, SD = 9.23 y) to 1 of 3 affect conditions (negative v. neutral v. positive narrative manipulation) in a hypothetical online experiment in which they were asked to imagine being diagnosed with cancer in one breast. We assessed 1) treatment choice, 2) affect toward CPM, and 3) perceived risk of future breast cancer in each breast (cancer affected and healthy) following lumpectomy, single mastectomy, and CPM. RESULTS: The manipulation caused women in the negative and neutral narrative conditions (26.9% and 26.4%, respectively) to choose CPM more compared with the positive narrative condition (19.1%). Across conditions, women's CPM affect did not differ. However, exploratory analyses addressing a possible association of affect toward cancer-related targets suggested that women in the negative narrative condition may have felt more positively toward CPM than women in the positive narrative condition. The manipulation did not have significant effects on breast cancer risk perceptions. LIMITATIONS: The manipulation of affect had a small effect size, possibly due to the hypothetical nature of this study and/or strong a priori knowledge and attitudes about breast cancer and its treatment options. CONCLUSION: Increased negative affect toward breast cancer increased choice of CPM over other surgical options and might have motivated more positive affective evaluations of CPM. HIGHLIGHTS: This study used narratives to elicit different levels of negative integral affect toward breast cancer to investigate the effects of affect on breast cancer treatment choices.Increased negative affect toward breast cancer increased the choice of double mastectomy over lumpectomy and single mastectomy to treat a hypothetical, early-stage cancer.The narrative manipulation of negative affect toward breast cancer did not change the perceived risks of future cancer following any of the surgical interventions.Negative affect toward breast cancer may have biased affective evaluations of double mastectomy.

Patient Understanding of Tumor Genomic Testing: A Quality Improvement Effort.

PURPOSE: Tumor genomic testing (TGT) has become increasingly adopted as part of standard cancer care for many cancers. Despite national guidelines around patient education before TGT, available evidence suggests that most patients' understanding of genomics remains limited, particularly lower-income and minority patients, and most patients are not informed regarding potential incidental germline findings. METHODS: To investigate and address limitations in patient understanding of TGT results, a Plan-Do-Study-Act (PDSA) approach is being used to assess needs, identify opportunities for improvement, and implement approaches to optimize patient education. We reviewed published guidelines related to pre-TGT provider-patient education and to identify key points (Plan). A provider quality improvement survey was completed (Do), which highlighted inconsistency in pre-TGT discussion practice across providers and minimal discussion with patients regarding the possibility of incidental germline findings. RESULTS: Patient focus groups and interviews (N = 12 patients) were completed with coding of each transcript (Study), which revealed themes including trouble differentiating TGT from other forms of testing, yet understanding that results could tailor therapy. The integration of data across this initial PDSA cycle identified consistent themes and opportunities, which were incorporated into a patient-directed, concise animated video for pre-TGT education (Act), which will form the foundation of a subsequent PDSA cycle. The video addresses how TGT may/may not inform treatment, the process for TGT using existing tissue or liquid biopsy, insurance coverage, and the potential need for germline genetics follow-up because of incidental findings. CONCLUSION: This PDSA cycle reveals key gaps and opportunities for improvement in patient education before TGT.

Integrating a Patient Decision Aid into the Electronic Health Record: A Case Report on the Implementation of BREASTChoice at 2 Sites.

Patient decision aids can support shared decision making and improve decision quality. However, decision aids are not widely used in clinical practice due to multiple barriers. Integrating patient decision aids into the electronic health record (EHR) can increase their use by making them more clinically relevant, personalized, and actionable. In this article, we describe the procedures and considerations for integrating a patient decision aid into the EHR, based on the example of BREASTChoice, a decision aid for breast reconstruction after mastectomy. BREASTChoice's unique features include 1) personalized risk prediction using clinical data from the EHR, 2) clinician- and patient-facing components, and 3) an interactive format. Integrating a decision aid with patient- and clinician-facing components plus interactive sections presents unique deployment issues. Based on this experience, we outline 5 key implementation recommendations: 1) engage all relevant stakeholders, including patients, clinicians, and informatics experts; 2) explicitly and continually map all persons and processes; 3) actively seek out pertinent institutional policies and procedures; 4) plan for integration to take longer than development of a stand-alone decision aid or one with static components; and 5) transfer knowledge about the software programming from one institution to another but expect local and context-specific changes. Integration of patient decision aids into the EHR is feasible and scalable but requires preparation for specific challenges and a flexible mindset focused on implementation. Highlights: Integrating an interactive decision aid with patient- and clinician-facing components into the electronic health record could advance shared decision making but presents unique implementation challenges.We successfully integrated a decision aid for breast reconstruction after mastectomy called BREASTChoice into the electronic health record.Based on this experience, we offer these implementation recommendations: 1) engage relevant stakeholders, 2) explicitly and continually map persons and processes, 3) seek out institutional policies and procedures, 4) plan for it to take longer than for a stand-alone decision aid, and 5) transfer software programming from one site to another but expect local changes.

Emotion and contralateral prophylactic mastectomy: A prospective study into surgical decision-making.

OBJECTIVE: Patients with non-familial, unilateral breast cancer have a low risk of contralateral breast cancer. Thus, clinical studies have shown no survival benefit for patients who undergo contralateral prophylactic mastectomy (CPM) compared to those undergoing unilateral surgeries for non-familial unilateral breast cancers. Despite this evidence, there has been a steady increase in rates of CPM in the U.S. Patient factors influencing this choice have been identified in previous studies, but seldom in a prospective manner. This prospective study was designed to assess emotion and any association with a patient's decision to ultimately undergo CPM. METHODS: We recruited patients with newly diagnosed, unilateral, non-metastatic breast cancer, who had not yet had surgery, to participate in a prospective, longitudinal study to examine the impact of emotions on CPM decision-making. RESULTS: Among the 86 final participants, all completed the pre-visit survey (100%) and 52 patients completed the post-visit survey (60%). Patients undergoing CPM were significantly younger than those who did not. There was no statistically significant association between emotion and receipt of CPM. There was a trend towards undergoing CPM in patients with a less open personality type and those with more negative emotion, though not statistically significant. CONCLUSIONS: This study found a trend toward increased CPM receipt in those with less open personality types and more negative emotion, especially post-consultation, but none of these findings was significant. Future work should include development of cancer-specific emotion scales and larger studies of possible connections between emotion, personality type and surgical decision-making for breast cancer patients.

Individualized Risk Prediction Tool for Serious Wound Complications After Mastectomy With and Without Immediate Reconstruction.

BACKGROUND: A greater proportion of patients with surgical risk factors are undergoing immediate breast reconstruction after mastectomy, resulting in the need for better risk prediction to inform decisions about the procedure. The objective of this study was to leverage clinical data to restructure a previously developed risk model to predict serious infectious and noninfectious wound complications after mastectomy alone and mastectomy plus immediate reconstruction for use during a surgical consultation. METHODS: The study established a cohort of women age 21 years or older treated with mastectomy from 1 July 2010 to 31 December 2015 using electronic health records from two hospitals. Serious infectious and non-infectious wound complications, defined as surgical-site infection, dehiscence, tissue necrosis, fat necrosis requiring hospitalization, or surgical treatment, were identified within 180 days after surgery. Risk factors for serious wound complications were determined using modified Poisson regression, with discrimination and calibration measures. Bootstrap validation was performed to correct for overfitting. RESULTS: Among 2159 mastectomy procedures, 1410 (65.3%) included immediate implant or flap reconstruction. Serious wound complications were identified after 237 (16.8%) mastectomy-plus-reconstruction and 30 (4.0%) mastectomy-only procedures. Independent risk factors for serious wound complications included immediate reconstruction, bilateral mastectomy, higher body mass index, depression, and smoking. The optimism-corrected C statistic of the risk prediction model was 0.735. CONCLUSIONS: Immediate reconstruction, bilateral mastectomy, obesity, depression, and smoking were significant risk factors for serious wound complications in this population of women undergoing mastectomy. Our risk prediction model can be used to counsel women before surgery concerning their individual risk of serious wound complications after mastectomy.