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.

Characterizing informational needs and information seeking behavior of patients with breast cancer.

BACKGROUND: Appropriate information may facilitate adjustment to cancer diagnoses. Our study aims to characterize informational satisfaction in breast cancer patients and assess resources used by patients to gain information. METHODS: Newly diagnosed Stage 0-III breast cancer patients seen at an academic medical center between May and September 2020 received questionnaires assessing information satisfaction. Patients indicated resources used to obtain information along with satisfaction with information received in various topics. A subset of questionnaire respondents completed semi-structured interviews. RESULTS: Fifty-two (35 â€‹%) patients completed the questionnaire. Patients received information from physicians (96 â€‹%), the internet (81 â€‹%), nurses (79 â€‹%), and fellow breast cancer patients (54 â€‹%). Interview participants preferred receiving information from providers when making medical decisions but found patient forums and social media to be important adjuncts for receiving information. CONCLUSION: Patients are satisfied with information received about diagnosis and treatment, but finances, sexual health, and fertility are less frequently discussed.

Information transparency with immediate release: Oncology clinician and patient perceptions.

INTRODUCTION: As part of the 21st Century Cures Act (April 2021), electronic health information (EHI) must be immediately released to patients. In this study, we sought to evaluate clinician and patient perceptions regarding this immediate release. METHODS: After surveying 33 clinicians and 30 patients, semi-structured interviews were conducted with a subset of the initial sample, comprising 8 clinicians and 12 patients. Open-ended questions explored clinicians' and patients' perceptions of immediate release of EHI and how they adjusted to this change. RESULTS: Ten themes were identified: Interpreting Results, Strategies for Patient Interaction, Patient Experiences, Communication Strategies, Provider Limitations, Provider Experiences, Health Information Interfaces, Barriers to Patient Understanding, Types of Results, and Changes due to Immediate Release. Interviews demonstrated differences in perceived patient distress and comprehension, emphasizing the impersonal nature of electronic release and necessity for therapeutic clinician-patient communication. CONCLUSIONS: Clinicians and patients have unique insights on the role of immediate release. Understanding these perspectives will help improve communication and develop patient-centered tools (glossaries, summary pages, additional resources) to aid patient understanding of complex medical information.

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.

Clinical implications of receptor conversions in breast cancer patients who have undergone neoadjuvant chemotherapy.

PURPOSE: In this study, we aimed to determine the incidence of receptor conversions after neoadjuvant chemotherapy (NAC) for breast cancer and assess the rate at which receptor conversion leads to changes in adjuvant therapy regimens. METHODS: We performed a retrospective review of female breast cancer patients treated with NAC at an academic breast center between January 2017 and October 2021. Patients with residual disease on surgical pathology and complete receptor status information for both pre-NAC and post-NAC specimens were included. Incidence of receptor conversions, defined as a change in at least one hormone receptor (HR) or HER2 status compared to preoperative specimens, was tabulated, and adjuvant therapy modalities were reviewed. Factors associated with receptor conversion were analyzed using chi-square tests and a binary logistic regression. RESULTS: Of the 240 patients with residual disease after NAC, 126 (52.5%) had receptor testing repeated. After NAC, 37 specimens (29%) had a receptor conversion. Receptor conversion resulted in the addition or removal of an adjuvant therapy in 8 patients (6%), indicating a number needed to screen of 16. Prior history of cancer, receipt of initial biopsy at an outside site, HR-positive tumors, and a pathologic stage of II or lower were factors associated with receptor conversions. CONCLUSION: HR and HER2 expression profiles frequently change after NAC and drive adjustments in adjuvant therapy regimens. Repeat testing of HR and HER2 expression should be considered in patients who receive NAC, especially in patients with early stage, HR-positive tumors whose initial biopsies were performed externally.

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.

Access to Results of Patient Reported Outcome Surveys Does Not Improve Survey Response Rates.

INTRODUCTION: In this embedded substudy of a longitudinal, randomized controlled trial, we sought to evaluate the effects of patient engagement and results feedback on longitudinal patient-reported outcome (PRO) survey completion rates. METHODS: Newly diagnosed stage 0-III breast cancer patients seen at an academic breast center between June 2019 and December 2021 were invited to participate in a longitudinal PRO study. Participants were emailed the BREAST-Q survey, a validated PRO scale, preoperatively and at regular intervals during their postoperative course. Patients were randomized into the intervention group, who received survey results upon completion, or the control group, who received no feedback. The primary endpoint was postoperative survey completion rate. An intention to treat analysis was performed and a quasi-Poisson regression was used to compare rates of longitudinal survey completion between the two groups. RESULTS: Of the 253 patients offered the preoperative survey, 115 were in the intervention group and 138 were in the control group. Postoperative survey completion rate was 54% for the intervention group and 47% for the control group. There was no significant difference in longitudinal postoperative survey completion rate between the two groups (rate ratio 1.10; 95% confidence interval [CI] 0.93-1.31). CONCLUSIONS: In this prospective randomized controlled study, patients did not complete surveys at a higher rate when their survey results were shared with them, suggesting that viewing these results without appropriate clinical context does not generate significant enhancement in patient engagement. Effective interventions to improve survey response rate must be identified to better evaluate PROs.

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.

Informational Needs of Surgical Oncology Patients: A Cross-Sectional Patient Survey.

INTRODUCTION: Patients newly diagnosed with cancer often seek information prior to being seen by a specialist. Little is known about the type of information desired and the sources used. We asked how patients find information about their new cancer diagnoses to improve information provision. METHODS: An anonymous seven-question survey was provided to new patients in the surgical and medical oncology clinics at a comprehensive cancer center from February 2021 to June 2021. RESULTS: Of 503 consecutive patients, 405 (81%) returned surveys; 49% female, 57% aged 51-75 y, and 71% Caucasian. Many (74%) sought information before their visit. Most (57%) relied on prior medical providers and 77% reported them as a trusted source. Nearly 80% of patients used at least one nonvalidated resource; 21% friends and relatives, 20% nongovernment or hospital resources, and 12% social media. Importantly, 23% found conflicting information. Respondents desired information on cancer treatment (58%), alternative therapies (35%), and nutrition and supplements (31%). CONCLUSIONS: Patients with cancer trust information from medical providers but seek information from a variety of sources that can provide conflicting information. These data support encouraging patients to use validated sources, providing robust organization-based resources, and engaging patients on topics such as alternative therapies and nutrition.

Medically Smart, Fiscally Illiterate: Lack of Financial Education Leads to Poor Retirement Savings Strategies in Surgical Trainees.

INTRODUCTION: Resident physicians are uniquely at high financial risk given their long training programs, lack of financial education, and documented poor financial literacy. Budgeting for retirement savings is an important metric for financial literacy. METHODS: Semi-structured interviews were conducted with residents from two distinct surgery programs to assess their current financial status and their knowledge of and attitudes toward retirement savings strategies. Qualitative analysis was performed and the themes identified were examined in the context of previously reported quantitative survey data. RESULTS: As previously reported, 105 residents at Site 1 completed a comprehensive financial survey 56% of respondents reported having no retirement savings. On additional analysis, only 26% residents surveyed reported optimal savings habits defined as contributing $5000/year to a retirement account starting their first year of training. 23 residents from both sites and representing all post-graduate-year (PGY) levels then participated in the focused, semi-structured interviews. Site 2 residents were less likely to be female (P = .02) and carried a significantly larger debt burden (p < .01) but were otherwise comparable to residents from Site 1. On qualitative analysis three consistent themes emerged: (1) Resident understanding of strategies for retirement savings is poor; (2) Lack of knowledge is the primary barrier; (3) Surgical residents desire financial education. CONCLUSIONS: Surgery residents have a large debt burden, minimal retirement savings and an overall lack of understanding of savings strategies. Well-designed, early, and accessible educational interventions may improve the "financial vital signs" of surgical trainees and establish habits for long-term financial success.

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.