"Everyone screens to some extent": Barriers and facilitators of developmental screening among children with sickle cell disease: A mixed methods study.

BACKGROUND: Developmental delays are common among children with sickle cell disease (SCD). Existing guidelines support consistent screening to increase the identification of deficits and support referral to rehabilitative interventions, yet adherence remains variable. This study sought to assess current practices and identify barriers and facilitators to improve developmental screening for children 0-3 years with SCD. PROCEDURE: A mixed methods approach, guided by the Exploration and Preparation stages of the Exploration, Preparation, Implementation, and Sustainment (EPIS) framework, assessed developmental screening practices among primary care providers and hematologists. Phase 1 included the SCD Developmental Surveillance and Screening Guideline and Practice Survey. Phase 2 included the SCD Developmental Screening Organizational Survey alongside semi-structured interviews. Descriptive and qualitative methods summarized the findings. RESULTS: Thirty-three providers from general pediatrics and hematology completed phase 1. Use of standardized developmental screening measures was variable, with the most frequently used being the Modified Checklist for Autism in Toddlers (77%) and the Ages and Stages Questionnaire (55%). Fifteen providers participated in phase 2, and reported they were most likely to engage in changes to improve their practice (mean = 4.4/5) and least likely to support spiritual health and well-being (mean = 3.5/5). Three themes emerged:(i) developmental screening is not standardized or specific to SCD, (ii) children with SCD benefit from a multidisciplinary team, and (iii) healthcare system limitations are a barrier. CONCLUSIONS: Developmental screening is inconsistent and insufficient for young children with SCD. Providers are interested in supporting children with SCD, but report a lack of standardized measures and consistent guidance as barriers.

Physical activity behaviour change in black prostate cancer survivors: a qualitative study using the Behaviour Change Wheel.

PURPOSE: Black individuals have a higher cancer burden and face greater obstacles to access cancer care resources when compared to White individuals. Radical prostatectomy is the standard surgical treatment and a common treatment option for prostate cancer; however, when compared to their White counterparts, Black individuals treated for prostate cancer often experience higher treatment-related side effects, resulting in a difficult recovery period. Physical activity is effective in alleviating treatment-related side effects; however, little is known about the barriers and facilitators to physical activity experienced by Black individuals after surgical management of prostate cancer to inform the design of physical activity interventions. METHODS: Twelve Black individuals underwent radical prostatectomy for prostate cancer participated in a focus group study. We used the Behaviour Change Wheel, which incorporates Capability, Opportunity, Behaviour (COM-B) model and the complementary Theoretical Domains Framework (TDF), as our guiding theoretical framework. Data was analyzed using deductive qualitative analysis. RESULTS: Facilitators and barriers were identified for all components of the Behaviour Change Wheel. Capability appeared to be a central factor to how participants described their physical activity engagement. Opportunity and motivation were described as both barriers and facilitators for behaviour change when occurring in isolation; however, when co-occurring with the presence of capability, they were described as facilitators that influence participants' physical activity engagement. CONCLUSIONS: Our results demonstrate barriers and facilitators that are recognized among Black individuals who have undergone radical prostatectomy for prostate cancer. The design of a physical activity intervention needs to consider the physical and psychological capabilities as the fundamental basis with the additional support of physical activity opportunity and motivation. IMPLICATIONS FOR CANCER SURVIVORS: Intersectionality across capability, opportunity, and motivation is essential to intervention design and development to increase physical activity in Black individuals surgically treated for prostate cancer.

Evaluating caregiver-clinician communication for tracheostomy placement in the neonatal intensive care unit: a qualitative inquiry.

OBJECTIVE: Identify stakeholders' tracheostomy decision-making information priorities in the Neonatal Intensive Care Unit (NICU). STUDY DESIGN: English-speaking caregivers and clinicians who participated in NICU tracheostomy discussions between January 2017 and December 2021 were eligible. They reviewed a pediatric tracheostomy communication guide prior to meeting. Interviews focused on tracheostomy decision-making experiences, communication preferences, and guide perceptions. Interviews were recorded, transcribed, and analyzed using iterative inductive/deductive coding to inform thematic analysis. RESULTS: Ten caregivers and nine clinicians were interviewed. Caregivers were surprised by the severity of their child's diagnosis and the intensive home care required, but proceeded with tracheostomy because it was the only chance for survival. All recommended that tracheostomy information be introduced early and in phases. Inadequate communication limited caregivers' understanding of post-surgical care and discharge requirements. All felt a guide could standardize communication. CONCLUSIONS: Caregivers seek detailed information regarding expectations after tracheostomy placement in the NICU and at home.

Clinicians' perspectives on barriers and facilitators to sperm banking in adolescent males with cancer: a mixed-methods study.

PURPOSE: To examine processes, barriers, and facilitators to sperm banking counseling and decision-making for adolescent males newly diagnosed with cancer from the perspective of clinicians who completed Oncofertility communication training. We also identify opportunities for improvement to inform future interventions and implementation. METHODS: A survey (N=104) and subsequent focus groups (N=15) were conducted with non-physician clinicians practicing in pediatric oncology who completed Oncofertility communication training. RESULTS: Most survey participants were confident in communicating about the impact of cancer on fertility (n=87, 83.7%) and fertility preservation options (n=80, 76.9%). Most participants reported never/rarely using a sperm banking decision tool (n=70, 67.3%), although 98.1% (n=102) said a decision tool with a family-centered approach would be beneficial. Primary themes in the subsequent focus groups included variable processes/workflows (inconsistent approaches to consult initiation; involvement of adolescents, caregivers, and various clinician types; assessment of puberty/sexual experience), structural and psychosocial barriers (cost and logistics, developmental, cultural, clinical acuity/prognosis), and facilitators (educational materials, alternative options for banking). Opportunities and strategies for improvement (including fertility preservation in existing research protocols; additional staffing/resources; oncologist education and buy-in; and development of decision tools) were informed by challenges identified in the other themes. CONCLUSION: Barriers to adolescent sperm banking remain, even among clinicians who have completed Oncofertility training. Although training is one factor necessary to facilitate banking, structural and psychosocial barriers persist. Given the complexities of offering sperm banking to pediatric populations, continued efforts are needed to mitigate structural barriers and develop strategies to facilitate decision-making before childhood cancer treatment.

Financial burden of men with localized prostate cancer: a process paper.

Background: Many individuals undergoing cancer treatment experience substantial financial hardship, often referred to as financial toxicity (FT). Those undergoing prostate cancer treatment may experience FT and its impact can exacerbate disparate health outcomes. Localized prostate cancer treatment options include: radiation, surgery, and/or active surveillance. Quality of life tradeoffs and costs differ between treatment options. In this project, our aim was to quantify direct healthcare costs to support patients and clinicians as they discuss prostate cancer treatment options. We provide the transparent steps to estimate healthcare costs associated with treatment for localized prostate cancer among the privately insured population using a large claims dataset. Methods: To quantify the costs associated with their prostate cancer treatment, we used data from the Truven Health Analytics MarketScan Commercial Claims and Encounters, including MarketScan Medicaid, and peer reviewed literature. Strategies to estimate costs included: (1) identifying the problem, (2) engaging a multidisciplinary team, (3) reviewing the literature and identifying the database, (4) identifying outcomes, (5) defining the cohort, and (6) designing the analytic plan. The costs consist of patient, clinician, and system/facility costs, at 1-year, 3-years, and 5-years following diagnosis. Results: We outline our specific strategies to estimate costs, including: defining complex research questions, defining the study population, defining initial prostate cancer treatment, linking facility and provider level related costs, and developing a shared understanding of definitions on our research team. Discussion and next steps: Analyses are underway. We plan to include these costs in a prostate cancer patient decision aid alongside other clinical tradeoffs.

Websites about, not for, adolescents? A systematic analysis of online fertility preservation information for adolescent and young adult cancer patients.

PURPOSE: Fertility preservation is an increasingly important topic in adolescent and young adult cancer survivorship, yet treatments remain under-utilized, possibly due to lack of awareness and understanding. The internet is widely used by adolescents and young adults and has been proposed to fill knowledge gaps and advance high-quality, more equitable care. As a first step, this study analyzed the quality of current fertility preservation resources online and identified opportunities for improvement. METHODS: We conducted a systematic analysis of 500 websites to assess the quality, readability, and desirability of website features, and the inclusion of clinically relevant topics. RESULTS: The majority of the 68 eligible websites were low quality, written at college reading levels, and included few features that younger patients find desirable. Websites mentioned more common fertility preservation treatments than promising experimental treatments, and could be improved with cost information, socioemotional impacts, and other equity-related fertility topics. CONCLUSIONS: Currently, the majority of fertility preservation websites are about, but not for, adolescent and young adult patients. High-quality educational websites are needed that address outcomes that matter to teens and young adults, with a priority on solutions that prioritize equity. IMPLICATIONS FOR CANCER SURVIVORS: Adolescent and young adult survivors have limited access to high-quality fertility preservation websites that are designed for their needs. There is a need for the development of fertility preservation websites that are clinically comprehensive, written at appropriate reading levels, inclusive, and desirable. We include specific recommendations that future researchers can use to develop websites that could better address AYA populations and improve the fertility preservation decision making process.

Health literacy in pediatric dermatology: challenges and opportunities.

PURPOSE OF REVIEW: Health literacy influences how children and families participate in their medical care, use health services, and overall health outcomes. Health literacy is underexplored in pediatric dermatology. In this scoping review, we provide examples of how limited health literacy can be a barrier to patient care in pediatric dermatology and how to mitigate its effects. RECENT FINDINGS: Limited health literacy is associated with worse health outcomes, decreased medication adherence, and decreased use of the healthcare system versus those with adequate health literacy. Materials created to help patients understand their medical conditions and treatment options often are written at a reading level far above that of the average patient and caregiver. Given the reading level of patient-facing materials, those with limited health literacy are more susceptible to medication administration errors, with omissions or incorrect dosing being most frequent to occur. There is limited research about how skills related to health literacy, including numeracy and electronic health literacy, can be addressed in pediatric dermatology. SUMMARY: Health literacy impacts patient care, treatment, and adherence in pediatric dermatology. This article gives examples of how to address common challenges in the pediatric dermatology clinic and presents areas for further research and improvement.

Eliciting Opinions on Health Messaging During the COVID-19 Pandemic: Qualitative Survey Study.

BACKGROUND: Effective public health messaging has been necessary throughout the COVID-19 pandemic, but stakeholders have struggled to communicate critical information to the public, especially in different types of locations such as urban and rural areas. OBJECTIVE: This study aimed to identify opportunities to improve COVID-19 messages for community distribution in rural and urban settings and to summarize the findings to inform future messaging. METHODS: We purposively sampled by region (urban or rural) and participant type (general public or health care professional) to survey participants about their opinions on 4 COVID-19 health messages. We designed open-ended survey questions and analyzed the data using pragmatic health equity implementation science approaches. Following the qualitative analysis of the survey responses, we designed refined COVID-19 messages incorporating participant feedback and redistributed them via a short survey. RESULTS: In total, 67 participants consented and enrolled: 31 (46%) community participants from the rural Southeast Missouri Bootheel, 27 (40%) community participants from urban St Louis, and 9 (13%) health care professionals from St Louis. Overall, we found no qualitative differences between the responses of our urban and rural samples to the open-ended questions. Participants across groups wanted familiar COVID-19 protocols, personal choice in COVID-19 preventive behaviors, and clear source information. Health care professionals contextualized their suggestions within the specific needs of their patients. All groups suggested practices consistent with health-literate communications. We reached 83% (54/65) of the participants for message redistribution, and most had overwhelmingly positive responses to the refined messages. CONCLUSIONS: We suggest convenient methods for community involvement in the creation of health messages by using a brief web-based survey. We identified areas of improvement for future health messaging, such as reaffirming the preventive practices advertised early in a crisis, framing messages such that they allow for personal choice of preventive behavior, highlighting well-known source information, using plain language, and crafting messages that are applicable to the readers' circumstances.

Websites about, not for, adolescents? A systematic analysis of online fertility preservation information for adolescent and young adult cancer patients.

Purpose Fertility preservation is an increasingly important topic in adolescent and young adult cancer survivorship, yet treatments remain under-utilized, possibly due to lack of awareness and understanding. The internet is widely used by adolescents and young adults and has been proposed to fill knowledge gaps and advance high-quality, more equitable care. As a first step, this study analyzed the quality of current fertility preservation resources online and identified opportunities for improvement. Methods We conducted a systematic analysis of 500 websites to assess the quality, readability, and desirability of website features, and the inclusion of clinically relevant topics. Results The majority of the 68 eligible websites were low quality, written at college reading levels, and included few features that younger patients find desirable. Websites mentioned more common fertility preservation treatments than promising experimental treatments, and could be improved with cost information, socioemotional impacts, and other equity-related fertility topics. Conclusions Currently, the majority of fertility preservation websites are about, but not for, adolescent and young adult patients. High-quality educational websites are needed that address outcomes that matter to teens and young adults, with a priority on solutions that prioritize equity. Implications for Cancer Survivors: Adolescent and young adult survivors have limited access to high-quality fertility preservation websites that are designed for their needs. There is a need for the development of fertility preservation websites that are clinically comprehensive, written at appropriate reading levels, inclusive, and desirable. We include specific recommendations that future researchers can use to develop websites that could better address AYA populations and improve the fertility preservation decision making process.

Discussing Cost and Value in Patient Decision Aids and Shared Decision Making: A Call to Action.

Direct and indirect costs of care influence patients' health choices and the ability to implement those choices. Despite the significant impact of care costs on patients' health and daily lives, patient decision aid (PtDA) and shared decision-making (SDM) guidelines almost never mention a discussion of costs of treatment options as part of minimum standards or quality criteria. Given the growing study of the impact of costs in health decisions and the rising costs of care more broadly, in fall 2021 we organized a symposium at the Society for Medical Decision Making's annual meeting. The focus was on the role of cost information in PtDAs and SDM. Panelists gave an overview of work in this space at this virtual meeting, and attendees engaged in rich discussion with the panelists about the state of the problem as well as ideas and challenges in incorporating cost-related issues into routine care. This article summarizes and extends our discussion based on the literature in this area and calls for action. We recommend that PtDA and SDM guidelines routinely include a discussion of direct and indirect care costs and that researchers measure the frequency, quality, and response to this information.

Impact of the COVID-19 pandemic on breast, colorectal, lung, and prostate cancer stage at diagnosis according to race.

PURPOSE: To determine if the COVID-19 pandemic has further exacerbated racial disparities in late-stage presentation of breast, colorectal, lung, and prostate cancers. METHODS: We conducted a registry-based retrospective study of patients with newly reported diagnoses of breast, colorectal, lung, and prostate cancers between March 2019-June 2019 (pre-COVID-19) and March 2020-June 2020 (early-COVID-19). We compared the volume of new diagnoses and stage at presentation according to race between both periods. RESULTS: During the study period, a total of 3528 patients had newly diagnosed cancer; 3304 of which had known disease stages and were included in the formal analyses. 467 (14.1%) were Blacks, and 2743 were (83%) Whites. 1216 (36.8%) had breast, 415 (12.6%) had colorectal, 827 (25%) had lung, and 846 (25.6%) had prostate cancers, respectively. The pre-COVID-19 period included 2120 (64.2%), and the early-COVID-19 period included 1184 (35.8%), representing a proportional 44.2% decline in the volume of new cases of breast, colorectal, lung, and prostate cancers, p < 0.0001. Pre-COVID-19, 16.8% were diagnosed with metastatic disease, versus 20.4% early-COVID-19, representing a proportional increase of 21.4% in the numbers of new cases with metastatic disease, p = 0.01. There was a non-significant proportional decline of 1.9% in Black patients diagnosed with non-metastatic breast, colorectal, lung, and prostate cancers early-COVID-19 (p = 0.71) and a non-significant proportional increase of 7% in Black patients diagnosed with metastatic disease (p = 0.71). Difference-in-difference analyses showed no statistically significant differences in metastatic presentation comparing Black to White patients. CONCLUSION: While we identified substantial reductions in the volume of new cancer diagnoses and increases in metastatic presentations due to the COVID-19 pandemic, the impact was similar for White and Black patients.

Developing an Educational and Decision Support Tool for Stage I Lung Cancer Using Decision Science.

BACKGROUND: Guidelines recommend shared decision-making about treatment options for high-risk, operable stage I lung cancer. Patient decision aids can facilitate shared decision-making; however, their development, implementation, and evaluation in routine clinical practice presents numerous challenges and opportunities. METHODS: The purpose of this review is to reflect on the process of tool development; identify the challenges associated with meeting the needs of patients, clinicians from multiple disciplines, and institutional workflow during implementation; and propose recommendations for future clinicians who wish to develop, refine, or implement similar tools into routine care. RESULTS: In this review, we: (1) discuss guidelines for decision aid development; (2) describe how we applied those to create an education and decision support tool for patients with clinical stage I lung cancer deciding between radiation therapy and surgical resection; and (3) highlight challenges in implementing and evaluating the tool. CONCLUSIONS: We provide recommendations for those seeking to develop, refine, or implement similar tools into routine care.

Advice from One Patient to Another: Qualitative Analysis of Patients' Perspectives About Chemotherapy Initiation.

Purpose: Although the association between delays in (neo)adjuvant chemotherapy initiation and adverse outcomes is well-documented, patient perspective regarding the lived experience among those with breast cancer delay is sparse. Project Start was a qualitative study designed to assess and identify the multilevel factors contributing to the barriers and facilitators of initiating chemotherapy. This report explores specific responses where patients with breast cancer provide insight and advice for newly diagnosed women on preparing for chemotherapy initiation and informs potential interventions to facilitate timely chemotherapy initiation. Patients and Methods: Women diagnosed with primary invasive breast cancer who experienced a ≥60-day delay in (neo)adjuvant chemotherapy initiation were included. Participants completed semi-structured interviews exploring barriers and facilitators to starting chemotherapy. Interviews were transcribed and coded to identify themes. Results: We enrolled (N = 22) participants with a median age at diagnosis of 53.5 years (range 27-70) who identified as Latina (n = 8), Black (n = 5), and non-Latina White (n = 9). Our participants indicated that engaging their medical teams and seeking support earlier were essential to initiate their treatment journeys. They emphasized being proactive and thorough in all aspects of their journey, particularly in processing medical recommendations, communicating with medical personnel, and identifying areas of need. Although explicit insight into chemotherapy delay was rare, participants expressed the importance of beginning treatment promptly. They shared advice on acquiring support (eg, financial, emotional, logistical, spiritual) and suggested connecting with breast cancer survivors to overcome the complex challenges of cancer care. Conclusion: Patient perspectives regarding barriers and treatment facilitators help provide insight into the lived experience of cancer care journeys that can inform interventions to improve patient support and outcomes. We are using these results to develop a pilot study to test the acceptability and feasibility of a culturally tailored patient navigation intervention to increase self-efficacy and avoid treatment delays.

What Cuts in Federal COVID-19 Funding Could Mean for Rural Communities.

The COVID-19 pandemic has widened the health disparities between urban and rural communities as rural populations face more limited health care capacities and worse COVID-19 outcomes than their urban counterparts. When this article was written, congress was debating continuing federal funds for free COVID-19 testing, vaccines, and treatment. In this article, we discuss the potential consequences rural communities may experience should such funding fail to be approved. Peer-reviewed literature and our research indicate these budget cuts could harm rural communities' financial distress, risk of severe disease outcomes, and trust in health care systems, making continued funding for public health resources critical for vulnerable rural communities.

Adapting and Developing an Academic and Community Practice Collaborative Care Model for Metastatic Breast Cancer Care (Project ADAPT): Protocol for an Implementation Science-Based Study.

BACKGROUND: Metastatic breast cancer (MBC) remains incurable despite significant treatment advances. Coordinating care for patients with MBC can be challenging given the various treatment options, available clinical trials, and frequent need for ancillary services. To optimize MBC care, we designed a project for adapting and developing an academic and community practice collaborative care model for MBC care (Project ADAPT), based on the Ending Metastatic Breast Cancer for Everyone (EMBRACE) program developed at Dana Farber Cancer Institute. OBJECTIVE: We aim to describe the implementation science-based study design and innovative components of Project ADAPT. METHODS: Project ADAPT uses the Dynamic Adaptation Process informed by the Exploration, Preparation, Implementation, Sustainment framework. Washington University School of Medicine (WUSM) partnered with 3 community hospitals in the St. Louis region covering rural and urban settings. The exploration and preparation phases provide patient and provider feedback on current referral practices to finalize the approach for the implementation phase. At the implementation phase, we will enroll patients with MBC at these 3 community sites to evaluate potential collaborative care at WUSM and assess the impact of this collaborative care model on referral satisfaction and acceptability for patients with MBC and their providers. Patients may then return to their community site for care or continue to receive part of their care at WUSM. We are incorporating virtual and digital health strategies to improve MBC care coordination in order to minimize patient burden. RESULTS: The exploration phase is ongoing. As of August 2021, we have recruited 21 patient and provider participants to complete surveys of the current collaborative care process at WUSM. Using a 2-tailed paired t test, 44 patients (including 10 patients from the exploration phase) and 32 oncologists are required to detect an effect size of 0.5 with 80% power at a level of significance of .05. Throughout this phase and in preparation for the implementation phase, we have iteratively updated and refined our surveys for the implementation phase based on testing of our data collection instruments. Our partner sites are in various stages of the single institutional review board (IRB) approval process. We have ongoing engagement with all partner sites, which has helped solidify our participant recruitment strategies and design patient-friendly recruitment materials. In addition, we have included a patient advocate on the research team. Members of the research team have launched a single IRB Support Network at WUSM to create a repository of the single IRB procedures in order to streamline the partner site onboarding process and facilitate enhanced collaboration across institutions. CONCLUSIONS: With this robust model, we expect that patients with MBC will receive optimal care regardless of geographical location and the model will improve patient and provider experiences when navigating the health system. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/35736.

Movement Through Chemotherapy Delay to Initiation Among Breast Cancer Patients: A Qualitative Analysis.

Purpose: (Neo) adjuvant chemotherapy decreases the risk of recurrence and improves overall survival among breast cancer patients; however, delays in chemotherapy initiation are associated with adverse health outcomes. The causes of delay are complex and include interrelated social, economic, cultural, environmental, and health system factors. Project Start was a qualitative study designed to assess and identify the multilevel factors contributing to the barriers and facilitators of initiating chemotherapy. Patients and Methods: Women diagnosed with primary invasive breast cancer who experienced ≥60 day delay in (neo) adjuvant chemotherapy initiation were included. Participants completed semi-structured interviews exploring barriers and facilitators to starting chemotherapy. Interviews were transcribed and coded to identify themes using the Sort and Sift, Think and Shift analytic approach. This analysis included thorough examination of the data by advancing through iterative analytic phases to identify core topics within and across transcripts. Results: We enrolled (N=22) participants with median age at diagnosis 53.5 years (range 27-70) who identified as Latina (n=8), Black (n=5), and non-Latina White (n=9). Participants described a common chemotherapy initiation process reflecting their unique needs as they transitioned through four stages: 1) receiving diagnosis and treatment recommendations; 2) processing treatment options; 3) "Flipping the Switch"; and 4) activating treatment and engaging in care. Limited explicit insight into their chemotherapy delay was expressed. Engagement across the self-, family-, community-, and medical-realms revealed interlinked and pivotal sources of support that helped participants navigate toward initiating chemotherapy. Specifically, the overarching themes included logistical, emotional, financial, and social sources of support and the relationship of these sources of support to participants' perceived self-efficacy to move toward initiating treatment. Conclusion: Activating women to be engaged in the treatment process across multiple levels appeared to facilitate initiating chemotherapy. Multilevel interventions that engage the patient, family, community, and medical team may support the initiation of timely chemotherapy.

Perceptions of Conflicting Breast Cancer Screening Recommendations Among Racially/Ethnically Diverse Women: a Multimethod Study.

BACKGROUND: Conflicting breast cancer screening recommendations have the potential to diminish informed decision making about screening. OBJECTIVE: We examined the knowledge, attitudes, and intentions related to divergent recommendations for breast cancer screening among racially/ethnically diverse women. DESIGN: We used a multimethod study design employing focus groups and questionnaires. Focus groups included: (1) two 10-min presentations on the national screening recommendations and the potential benefits and harms of screening and (2) an interactive discussion. Data were collected: 8/3/2017 to 11/19/2019. Analysis occurred from 1/21/2019 to 7/24/2020. PARTICIPANTS: Participants were (1) women 40-75 years; (2) English or Spanish speaking; (3)self-identified as Latina, Black, or non-Latina White; and (4) no known increased risk for breast cancer. MAIN MEASURES: Main outcomes were participants' knowledge and perceptions of benefits and harms of screening mammography and their screening intentions. Focus groups were transcribed and analyzed using a qualitative descriptive approach. Quantitative data were summarized using descriptive statistics. KEY RESULTS: One hundred thirty-four women (n=52, 40-49 years; n=82, 50-75 years) participated in 28 focus groups. Participants were Latina (n=44); Black (n=51); and non-Latina White (n=39). Approximately one-quarter (n=32) had limited health literacy and almost one-fifth (n=23) had limited numeracy. In the context of differing national screening recommendations, participants questioned the motives of the recommendation-making agencies, including the role of costs and how costs were considered when making screening recommendations. Participants expressed concern that they were not represented (e.g., race/ethnicity) in the data informing the recommendations. Immediately following the focus groups, most participants expressed intention to screen within the upcoming year (pre n=100 vs. post n=107). CONCLUSIONS: Divergent breast cancer screening recommendations may lead to mistrust and paradoxically reinforce high overall enthusiasm for screening.

Exploring and supporting older women's chemotherapy decision-making in early-stage breast cancer.

BACKGROUND: Few studies have focused on the therapeutic decision-making process in older adults with breast cancer. This study investigated older adult breast cancer patients' perspectives on neo/adjuvant chemotherapy, thereby identifying informational needs and preferences as patients navigate the treatment decision-making process. MATERIALS AND METHODS: Women ≥65 years diagnosed with early-stage breast cancer were recruited from an academic cancer center after deciding whether or not to receive neo/adjuvant chemotherapy. Participants completed surveys assessing sociodemographic characteristics, health literacy/numeracy, and shared decision making. They took part in individual semi-structured interviews to explore their perspectives, experiences, and values regarding treatment. Interviews were audio-recorded and transcribed. Transcripts were analyzed using the Sort and Sift, Think and Shift qualitative approach. Quantitative data was summarized using descriptive statistics. RESULTS: Of the 26 participants (age range 65-92 years; 81% non-Hispanic White; 72% ≥ college degree; 50% unmarried), 58% elected to undergo chemotherapy and 42% declined. The majority of participants had adequate health literacy/numeracy and engaged in shared decision-making. Thematic analysis revealed several commonalities regardless of the decision to undergo chemotherapy. Participants sought information regarding their disease/treatment. They referenced subjective experiences of friends/family members with cancer. Self-perception of health and the side effects of chemotherapy were also key factors. Participants placed importance on the maintenance of quality of life throughout treatment. CONCLUSIONS: Decision-making strategies in older patients were shaped by knowledge, values, and the anecdotal experiences of others. Results can inform the development of decision support tools for older patients and physicians to better facilitate the shared decision-making process.

Genetic Counseling and Testing in African American Patients With Breast Cancer: A Nationwide Survey of US Breast Oncologists.

PURPOSE: To determine if physicians' self-reported knowledge, attitudes, and practices regarding genetic counseling and testing (GCT) vary by patients' race. METHODS: We conducted a nationwide 49-item survey among breast oncology physicians in the United States. We queried respondents about their own demographics, clinical characteristics, knowledge, attitudes, practices, and perceived barriers in providing GCT to patients with breast cancer. RESULTS: Our survey included responses from 277 physicians (females, 58.8%; medical oncologists, 75.1%; academic physicians, 61.7%; and Whites, 67.1%). Only 1.8% indicated that they were more likely to refer a White patient than refer an African American patient for GCT, and 66.9% believed that African American women with breast cancer have lower rates of GCT than White women. Regarding perceived barriers to GCT, 63.4% of respondents indicated that African American women face more barriers than White women do and 21% felt that African American women require more information and guidance during the GCT decision-making process than White women. Although 32% of respondents indicated that lack of trust was a barrier to GCT in all patients, 58.1% felt that this was a greater barrier for African American women (P < .0001). Only 13.9% believed that noncompliance with GCT is a barrier for all patients, whereas 30.6% believed that African American women are more likely than White women to be noncompliant (P < .0001). CONCLUSION: We demonstrated that racial differences exist in oncology physicians' perceived barriers to GCT for patients with breast cancer. This nationwide survey will serve as a basis for understanding physicians' determinants of GCT for African American women and highlights the necessity of education and interventions to address bias among physicians. Awareness of such physician biases can enable further work to address inequities, ultimately leading to improved GCT equity for African American women with breast cancer.