A systematic review and meta-analysis of English language online patient education materials in breast cancer: Is readability the only story?

BACKGROUND: Online patient education materials (OPEMs) are an increasingly popular resource for women seeking information about breast cancer. The AMA recommends written patient material to be at or below a 6th grade level to meet the general public's health literacy. Metrics such as quality, understandability, and actionability also heavily influence the usability of health information, and thus should be evaluated alongside readability. PURPOSE: A systematic review and meta-analysis was conducted to determine: 1) Average readability scores and reporting methodologies of breast cancer readability studies; and 2) Inclusion frequency of additional health literacy-associated metrics. MATERIALS AND METHODS: A registered systematic review and meta-analysis was conducted in Ovid MEDLINE, Web of Science, Embase.com, CENTRAL via Ovid, and ClinicalTrials.gov in June 2022 in adherence with the PRISMA 2020 statement. Eligible studies performed readability analyses on English-language breast cancer-related OPEMs. Study characteristics, readability data, and reporting of non-readability health literacy metrics were extracted. Meta-analysis estimates were derived from generalized linear mixed modeling. RESULTS: The meta-analysis included 30 studies yielding 4462 OPEMs. Overall, average readability was 11.81 (95% CI [11.14, 12.49]), with a significant difference (p < 0.001) when grouped by OPEM categories. Commercial organizations had the highest average readability at 12.2 [11.3,13.0]; non-profit organizations had one of the lowest at 11.3 [10.6,12.0]. Readability also varied by index, with New Fog, Lexile, and FORCAST having the lowest average scores (9.4 [8.6, 10.3], 10.4 [10.0, 10.8], and 10.7 [10.2, 11.1], respectively). Only 57% of studies calculated average readability with more than two indices. Only 60% of studies assessed other OPEM metrics associated with health literacy. CONCLUSION: Average readability of breast cancer OPEMs is nearly double the AMA's recommended 6th grade level. Readability and other health literacy-associated metrics are inconsistently reported in the current literature. Standardization of future readability studies, with a focus on holistic evaluation of patient materials, may aid shared decision-making and be critical to increased screening rates and breast cancer awareness.

Barriers and facilitators to measuring patient reported outcomes in an academic breast cancer clinic: An application of the RE-AIM framework.

BACKGROUND: Patient reported outcome measures (PROMs) are important for patient-centered, value-based care; however, implementation into surgical practice remains limited. We aimed to demonstrate feasibility of measuring PROMs in an academic breast cancer clinic. METHODS: We conducted a pilot study implementing the patient-reported outcome measure BREAST-Q among patients with Stage 0-III breast cancer at a single institution from 06/2019-03/2023 using the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework. Barriers and facilitators were characterized. Survey completion was assessed pre-operatively and up to 12 months post-operatively. RESULTS: Barriers included limited time and lack of incorporation into the electronic medical record. Facilitators included utilizing trained team members and an automated workflow. Among eligible patients, 74% completed BREAST-Q at 2-weeks post-operatively and 55% at 12 months post-operatively. CONCLUSIONS: We describe the implementation of a PROM using the RE-AIM framework, highlighting facilitators and barriers that may assist others in collecting patient-reported outcome data.

Are Diagnostic Delays Associated with Distress in Breast Cancer Patients?

Introduction: Receiving a new breast cancer diagnosis can cause anxiety and distress, which can lead to psychologic morbidity, decreased treatment adherence, and worse clinical outcomes. Understanding sources of distress is crucial in providing comprehensive care. This study aims to evaluate the relationship between delays in breast cancer diagnosis and patient-reported distress. Secondary outcomes include assessing patient characteristics associated with delay. Methods: Newly diagnosed breast cancer patients who completed a distress screening tool at their initial evaluation at an academic institution between 2014 and 2019 were retrospectively evaluated. The tool captured distress levels in the emotional, social, health, and practical domains with scores of "high distress" defined by current clinical practice guidelines. Delay from mammogram to biopsy, whether diagnostic or screening mammogram, was defined as >30 days. Result: 745 newly diagnosed breast cancer patients met inclusion criteria. Median time from abnormal mammogram to core biopsy was 12 days, and 11% of patients experienced a delay in diagnosis. The non-delayed group had higher emotional (p = 0.04) and health (p = 0.03) distress than the delayed group. No statistically significant differences in social distress were found between groups. Additionally, patients with higher practical distress had longer time interval between mammogram and surgical intervention compared to those with lower practical distress. Older age, diagnoses of invasive lobular carcinoma or ductal carcinoma in situ, and clinical anatomic stages 0-I were associated with diagnostic delay. Conclusion: Patients with higher emotional or health-related distress were more likely to have timely diagnoses of breast cancer, suggesting that patients with higher distress may seek healthcare interventions more promptly. Improved understanding of sources of distress will permit early intervention regarding the devastating impact of breast cancer diagnosis.

Postoperative Outcomes After Staged Versus Coordinated Breast Surgery and Bilateral Salpingo-Oophorectomy.

BACKGROUND: The objective of this study was to compare postoperative complication rates and healthcare charges between patients who underwent coordinated versus staged breast surgery and bilateral salpingo-oophorectomy (BSO). PATIENTS AND METHODS: The MarketScan administrative database was used to identify adult female patients with invasive breast cancer or BRCA1/BRCA2 mutations who underwent BSO and breast surgery (lumpectomy or mastectomy with or without reconstruction) between 2010 and 2015. Patients were assigned to the coordinated group if a breast operation and BSO were performed simultaneously or assigned to the staged group if BSO was performed separately. Primary outcomes were (1) incidence of 90-day postoperative complications and (2) 2-year aggregate perioperative healthcare charges. Fisher's exact tests, Wilcoxon rank-sum tests, and multivariable regression analyses were performed. RESULTS: Of the 4228 patients who underwent breast surgery and BSO, 412 (9.7%) were in the coordinated group and 3816 (90.3%) were in the staged group. The coordinated group had a higher incidence of postoperative complications (24.0% vs. 17.7%, p < 0.01), higher risk-adjusted odds of postoperative complications [odds ratio (OR) 1.37, 95% confidence interval (CI) 1.06-1.76, p = 0.02], and similar aggregate healthcare charges before (median charges: $106,500 vs. $101,555, p = 0.96) and after risk-adjustment [incidence rate ratio (IRR) 1.00, 95% CI 0.93-1.07; p = 0.95]. In a subgroup analysis, incidence of postoperative complications (12.9% for coordinated operations vs. 11.7% for staged operation, p = 0.73) was similar in patients whose breast operation was a lumpectomy. CONCLUSIONS: While costs were similar, coordinating breast surgery with BSO was associated with more complications in patients who underwent mastectomy, but not in patients who underwent lumpectomy. These data should inform shared decision-making in high-risk patients.

De-implementation of Axillary Dissection in Women Undergoing Mastectomy for Breast Cancer.

BACKGROUND: Completion axillary lymph node dissection (cALND) was standard treatment for breast cancer with positive sentinel lymph nodes (SLNs) until 2011, when data from the Z11 and AMAROS trials challenged its survival benefit in early stage breast cancer. We assessed the contribution of patient, tumor, and facility factors on cALND use in patients undergoing mastectomy and SLN biopsy. PATIENTS AND METHODS: Using the National Cancer Database, patients diagnosed from 2012 to 2017 who underwent upfront mastectomy and SLN biopsy with at least one positive SLN were included. A multivariable mixed effects logistic regression model was used to determine the effect of patient, tumor, and facility variables on cALND use. Reference effect measures (REM) were used to compare the contribution of general contextual effects (GCE) to variation in cALND use. RESULTS: From 2012 to 2017, the overall use of cALND decreased from 81.3% to 68.0%. Overall, younger patients, larger tumors, higher grade tumors, and tumors with lymphovascular invasion were more likely to undergo cALND. Facility variables, including higher surgical volume and facility location in the Midwest, were associated with increased use of cALND. However, REM results showed that the contribution of GCE to the variation in cALND use exceeded that of the measured patient, tumor, facility, and time variables. CONCLUSIONS: There was a decrease in cALND use during the study period. However, cALND was frequently performed in women after mastectomy found to have a positive SLN. There is high variability in cALND use, mainly driven by interfacility practice variation rather than specific high-risk patient and/or tumor characteristics.

The good, the bad, and the ugly: Operative staff perspectives of surgeon coping with intraoperative errors.

BACKGROUND: Intraoperative errors are inevitable, and how surgeons respond impacts patient outcomes. Although previous research has queried surgeons on their responses to errors, no research to our knowledge has considered how surgeons respond to operative errors from a contemporary first-hand source: the operating room staff. This study evaluated how surgeons react to intraoperative errors and the effectiveness of employed strategies as witnessed by operating room staff. METHODS: A survey was distributed to operating room staff at 4 academic hospitals. Items included multiple-choice and open-ended questions assessing surgeon behaviors observed after intraoperative error. Participants reported the perceived effectiveness of the surgeon's actions. RESULTS: Of 294 respondents, 234 (79.6%) reported being in the operating room when an error or adverse event occurred. Strategies positively associated with effective surgeon coping included the surgeon telling the team about the event and announcing a plan. Themes emerged regarding the importance of the surgeon remaining calm, communicating, and not blaming others for the error. Evidence of poor coping also emerged: "Yelling, feet stomping and throwing objects onto the field. [The surgeon] cannot articulate needs well because of anger." CONCLUSION: These data from operating room staff corroborates previous research presenting a framework for effective coping while shedding light on new, often poor, behaviors that have not emerged in prior research. Surgical trainees will benefit from the now-enhanced empirical foundation on which coping curricula and interventions can be built.

Operative Management in Stage IV Breast Cancer.

Traditionally, surgical therapy for primary breast lesions in stage IV breast cancer has been reserved for palliation. Several retrospective studies have suggested a possible survival benefit with surgical resection of the primary tumor in patients with distant metastases. However, evidence from prospective, randomized controlled trials suggest that locoregional control provides no clear survival advantage for patients with stage IV breast cancer. Future areas of inquiry include identification of subsets of patients who may derive a survival benefit from locoregional control.

Financial Toxicity of Breast Cancer Care: The Patient Perspective Through Surveys and Interviews.

INTRODUCTION: Although the economic burden of cancer care is an emerging concern in the United States, the potential financial toxicity of breast cancer care at the patient level remains poorly understood. This study aims to characterize the scope of the contributors to financial distress on breast cancer patients and the resources utilized to address them. METHODS: Adult female patients diagnosed with invasive breast cancer or ductal carcinoma in situ between 2014 and 2019 at a single institution were retrospectively evaluated. Those who enrolled in copay assistance or indicated financial concerns on an intake distress screen were provided a web-based survey assessing financial changes, resources used, and financial engagement with providers. Semi-structured interviews further explored sources of financial distress and were analyzed by two researchers using grounded theory methodology. RESULTS: Sixty-eight patients completed the online survey, 15 of the 68 also participated in semi-structured phone interviews. On the online survey 74% of participants endorsed a financial distress score ≥5 on a scale of 0-10. Seventy-four percent changed their budget, 72% used their savings, and 60% cut down on spending. However, only 40% used resources such as financial counseling or financial assistance. Interviews revealed three major contributors to financial distress: (1) unexpected medical and nonmedical expenses, (2) lost revenue from missed work, and (3) altered budgeting. CONCLUSIONS: Many breast cancer patients experience significant financial distress without access to the resources they need. This study highlights the need for financial transparency, supportive financial services counseling at the time of diagnosis, throughout treatment and beyond.

Surgeon Perceptions of the Integration of Patient-Reported Outcome Measures into Clinical Practice.

INTRODUCTION: Patient-reported outcome measures (PROMs/PROM) are standardized, validated instruments used to measure the patient's perception of their own health status including their symptoms, functional wellbeing, and mental health. Although PROMs were initially developed as research tools, their use in clinical practice for shared decision-making and to assess the impact of disease and treatment on quality of life of individual patients has been increasing. There is a paucity of research exploring providers' perspectives on the clinical integration of PROMs. We sought to use a qualitative methodology to understand surgeons' perceptions of integrating PROMs into their clinical practices. METHODS: Semistructured interviews were performed from November 2019 until August 2020. All interviews were recorded and transcribed verbatim. Thematic saturation was achieved after interviewing nine surgeons representing eight surgical specialties. Qualitative interview data were thematically analyzed using an inductive approach facilitated by Atlas.ti qualitative software. RESULTS: Forty seven unique codes were identified that fit into 21 themes that revealed five novel insights. Key insights included: (1) PROM data can modify surgical practice on an individual and institutional level, (2) Surgeon's view PROM clinical integration as a potential method of advancing patient-centered care, (3) There are various institutional processes that must be in place, including strong leadership and an integrative platform, to enable successful clinical PROM integration, (4) Surgeons appreciate challenges of integrating PROMs into surgical practice including risks of incorrect use or interpretation, and (5) A PROM platform must be adaptable to the diversity within surgery and to unique physician workflows. CONCLUSIONS: Surgeons perceived value from integrating PROMs into routine care to better inform patients during preoperative discussions and to help identify at-risk patients in the postoperative period. However, they also identified numerous barriers to the implementation of an integrated system for the routine use of PROMs in clinical practice and expressed concern about using PROMs to compare operative outcomes between surgeons. Based on this work, institutions that want to incorporate PROMs into surgical practice need a leadership team capable of supporting the change management necessary for effective integration and use a PROM platform that gives individual surgeons and surgical teams the ability to customize platforms for their unique practices.

Addressing an epidemic: Improving guideline-concordant opioid prescribing in surgical patients.

BACKGROUND: Excess postoperative opioid prescribing increases the risk of opioid abuse, diversion, and addiction. Clinicians receive variable training for opioid prescribing, and despite the availability of guidelines, wide variations in prescribing practices persist. This quality improvement initiative aimed to assess and improve institutional adherence to published guidelines. METHODS: This study represented a quality improvement initiative at an academic medical center implemented over a 6-month period with data captured 1 year before and after implementation. The quality improvement initiative focused on prescribing education and monthly feedback reports for clinicians. All opioid-naïve, adult patients undergoing a reviewed procedure were included. Demographics, surgical details, hospital course, and opioid prescriptions were reviewed. Opioids prescribed on discharge were evaluated for concordance with recommendations based on published guidelines. Pre- and postimplementation cohorts were compared. RESULTS: There were 4,905 patients included: 2,343 preimplementation and 2,562 postimplementation. There were similar distributions in patient demographics between the 2 cohorts. Guideline-concordant discharge prescriptions improved from 50.3% to 72.2% after the quality improvement initiative was implemented (P < .001). Adjusted analysis controlling for sex, age, discharge clinician, length of stay, outpatient surgery, and procedure demonstrated a 190% increase in odds of receiving a guideline-concordant opioid prescription on discharge in the postimplementation cohort (adjusted odds ratio 2.90; 95% confidence interval = 2.55-3.30). CONCLUSION: This study represented a successful quality improvement initiative improving guideline-concordant opioid discharges and decreasing overprescribing. This study suggested published guidelines are insufficient without close attention to elements of effective change management including the critical importance of locally targeting educational efforts and suggested that real-time, data-driven feedback amplifies impact on prescribing behavior.

No One-Size-Fits-All: Sexual Health Education Preferences in Patients with Breast Cancer.

BACKGROUND: Using explanatory mixed methods, we characterize the education that patients with breast cancer received about potential sexual health effects of treatment and explore preferences in format, content, and timing of education. PATIENTS AND METHODS: Adult patients with stage 0-IV breast cancer seen at an academic breast center during December 2020 were emailed questionnaires assessing sexual health symptoms experienced during treatment. Patients interested in further study involvement were invited to participate in semistructured interviews. These interviews explored sexual health education provided by the oncology team and patient preferences in content, format, and timing of education delivery. RESULTS: Eighty-seven (32%) patients completed the questionnaire. Most patients reported decreased sexual desire (69%), vaginal dryness (63%), and less energy for sexual activity (62%) during/after treatment. Sixteen patients participated in interviews. Few women reported receiving information about potential sexual effects of breast cancer treatment; patients who did reported a focus on menopausal symptoms or fertility rather than sexual function. Regarding preferences in format, patients were in favor of multiple options being offered rather than a one-size-fits-all approach, with particular emphasis on in-person options and support groups. Patients desired education early and often throughout breast cancer treatment, not only about sexual side effects but also on mitigation strategies, sexual function, dating and partner intimacy, and body image changes. CONCLUSION: Few patients received information about the sexual health effects of breast cancer treatment, though many experienced symptoms. Potential adverse effects should be discussed early and addressed often throughout treatment, with attention to strategies to prevent and alleviate symptoms and improve overall sexual health.

Innovation in Breast Surgery: Practical and Ethical Considerations.

The adoption of innovation is essential to the evolution of patient care. Breast surgical oncology advances through incorporating new techniques, devices, and procedures. Historical changes in practice standards from radical to modified radical mastectomy or axillary node dissection to sentinel node biopsy reduced morbidity without sacrifice in oncologic outcome. Contemporary oncoplastic techniques afford broader consideration for breast conservation and the potential for improved cosmetic outcomes. At present, many breast surgeons face the decision of which wireless device to use for localization of nonpalpable lesions. Consideration for future changes, such as robotic mastectomy, are on the horizon. No guideline exists to assist breast surgeons in the adoption of innovation into practice. The Ethics Committee of the American Society of Breast Surgeons acknowledges that breast surgeons confront many questions associated with onboarding innovation. This paper aims to provide a framework for asking relevant questions along with the ethical principles to consider when integrating an innovation into practice.

Patient comprehension of breast pathology report terminology: The need for patient-centered resources.

BACKGROUND: As health care continues to evolve toward information transparency, an increasing number of patients have access to their medical records, including result reports that were not originally designed to be patient-facing. Previous studies have demonstrated that patients have poor understanding of medical terminology. However, patient comprehension of terminology specific to breast pathology reports has not been well studied. We assessed patient understanding of common medical terms found in breast pathology reports. METHODS: A survey was administered electronically to patients scheduled for a screening mammogram within a multisite health care system. Participants were asked to objectively define and interpret 8 medical terms common to breast biopsy pathology reports. Patient perception of the utility of various educational tools was also assessed. Demographic information including health literacy, education level, previous cancer diagnosis, and primary language was collected. RESULTS: In total, 527 patients completed the survey. Terms including "malignant" and "benign" were the most correctly defined at 80% and 73%, respectively, whereas only 1% correctly defined "high grade." Factors including race/ethnicity and education level were correlated with more correct scores. Patients preferred educational tools that were specific to their diagnosis and available at the time they were reviewing their results. CONCLUSION: Patient comprehension of common medical terminology is poor. Potential assumptions of understanding based on patient factors including education, past medical history, and occupation are misinformed. With the newly mandated immediate release of information to patients, there is a pressing need to develop and integrate educational tools to support patients through all aspects of their care.

Impact of a Physician Clinical Support Supervisor in Supporting Patients and Families, Staff, and the Health-Care System During the COVID-19 Pandemic.

As coronavirus disease 2019 (COVID-19), caused by severe acute respiratory syndrome coronavirus 2 (SARS-COV2), became a pandemic, hospitals activated Hospital Incident Command Systems (HICS). At our institution, we included a role of Physician Clinical Support Supervisor (PCSS) in the HICS structure. The PCSS role was filled by physicians who served hospital leadership positions, such as Physician Advisor, Medical Staff leadership, Chief Quality Officer, and Chief Medical Informatics Officer. In an effort to summarize the lessons learned by implementation of the PCSS role during the COVID-19 pandemic, we evaluated a PCSS working Microsoft Teams™ spreadsheet and the experience of physicians in the PCSS role. Through efficient daily 2-way communication between frontline providers, HICS, and hospital leadership, the PCSS role facilitated rapid change and improved support for frontline staff, patients and families, and the health-care system. We recommend including the role of PCSS in HICS structure in the event of future pandemics or other crises.