Advice from one patient to another: Qualitative analysis of patients\u27 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

Discussing cost and value in patient decision aids and shared decision making: A call to action

Direct and indirect costs of care influence patients\u27 health choices and the ability to implement those choices. Despite the significant impact of care costs on patients\u27 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\u27s 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

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 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\u27 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

Physician Role in Physical Activity for African-American Males Undergoing Radical Prostatectomy for Prostate Cancer

Purpose Physical activity is recognized as a complementary therapy to improve physical and physiological functions among prostate cancer survivors. Little is known about communication between health providers and African-American prostate cancer patients, a high risk population, regarding the health benefits of regular physical activity on their prognosis and recovery. This study explores African-American prostate cancer survivors’ experiences with physical activity prescription from their physicians. Methods Three focus group interviews were conducted with 12 African-American prostate cancer survivors in May 2014 in St. Louis, MO. Participants’ ages ranged from 49 to 79 years, had completed radical prostatectomy, and their time out of surgery varied from 7 to 31 months. Results Emerged themes included physician role on prescribing physical activity, patients’ perceived barriers to engaging in physical activity, perception of normalcy following surgery, and specific resources survivors’ sought during treatment. Of the 12 men who participated, 8 men (67%) expressed that their physicians did not recommend physical activity for them. Although some participants revealed they were aware of the importance of sustained physical activity on their prognosis and recovery, some expressed concerns that urinary dysfunction, incontinence, and family commitments prevented them from engaging in active lifestyles. Conclusions Transitioning from post radical prostatectomy treatment to normal life was an important concern to survivors. These findings highlight the importance of physical activity communication and prescription for prostate cancer patients

Addressing Health Literacy in Patient Decision Aids:An Update from the International Patient Decision Aid Standards

BACKGROUND: There is increasing recognition of the importance of addressing health literacy in patient decision aid (PtDA) development. PURPOSE: An updated review as part of IPDAS 2.0 examined the extent to which PtDAs are designed to meet the needs of low health literacy/disadvantaged populations. DATA SOURCES: Reference list of Cochrane review of randomised controlled trials (RCTs) of PtDAs (2014, 2017 and upcoming 2021 versions). STUDY SELECTION: RCTs that assessed the impact of PtDAs on low health literacy or other disadvantaged groups (i.e. ≥50% participants from disadvantaged groups and/or subgroup analysis in disadvantaged group/s). DATA EXTRACTION: Two researchers independently extracted data into a standardized form including PtDA development and evaluation details. We searched online repositories and emailed authors to access PtDAs to verify reading level, understandability and actionability. DATA SYNTHESIS: Twenty-five out of 213 RCTs met inclusion criteria illustrating that only 12% of studies addressed the needs of low health literacy or other disadvantaged groups. Reading age was calculated in 8/25 studies (33%), which is recommended in previous IPDAS guidelines. We accessed and independently assessed 11 PtDAs. None were written at 6(th) grade level or below. Ten PtDAs met the recommended threshold for understandability, but only 5 met the recommended threshold for actionability. We also conducted a post-hoc subgroup meta-analysis and found that knowledge improvements after receiving a PtDA were greater in studies that reported using strategies to reduce cognitive demand in PtDA development compared to studies that did not (Chi(2)=14.11, p=0.0002, I(2)=92.9%). LIMITATIONS: We were unable to access 13 out of 24 PtDAs. CONCLUSIONS: Greater attention to health literacy and disadvantaged populations is needed in the field of PtDAs to ensure equity in decision support

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 \u3c 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

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

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

BackgroundMany 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.MethodsTo 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.ResultsWe 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 stepsAnalyses are underway. We plan to include these costs in a prostate cancer patient decision aid alongside other clinical tradeoffs

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

BackgroundEffective 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. ObjectiveThis 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. MethodsWe 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. ResultsIn 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. ConclusionsWe 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

Limitations of the S-TOFHLA in measuring poor numeracy: a cross-sectional study

Abstract Background Although the Short Test of Functional Health Literacy in Adults (S-TOFHLA) is widely used, misidentification of individuals with low health literacy (HL) in specific HL dimensions, like numeracy, is a concern. We examined the degree to which individuals scored as “adequate” HL on the S-TOFHLA would be considered as having low HL by two additional numerical measures. Methods English-speaking adults aged 45–75 years were recruited from a large, urban academic medical center and a community foodbank in the United States. Participants completed the S-TOFHLA, the Subjective Numeracy Scale (SNS), and the Graphical Literacy Measure (GL), an objective measure of a person’s ability to interpret numeric information presented graphically. Established cut-points or a median split classified participants and having high and low numeracy. Results Participants (n = 187), on average were: aged 58 years; 63% female; 70% Black/African American; and 45% had a high school degree or less. Of those who scored “adequate” on the S-TOFHLA, 50% scored low on the SNS and 40% scored low on GL. Correlation between the S-TOFHLA and the SNS Total was moderate (r = 0.22, n = 186, p = 0.01), while correlation between the S-TOFHLA and the GL Total was large (r = 0.53, n = 187, p ≤ 0.01). Conclusions Findings suggest that the S-TOFHLA may not capture an individuals’ HL in the dimension of numeracy. Efforts are needed to develop more encompassing and practical strategies for identifying those with low HL for use in research and clinical practice. Trial registration NCT02151032 (retrospectively registered: May 30, 2014)