Lay healthcare worker financial toxicity intervention: a pilot financial toxicity screening and referral program.

PURPOSE: Financial toxicity is a source of significant distress for patients with urologic cancers, yet few studies have addressed financial burden in this patient population. METHODS: We developed a financial toxicity screening program using a lay health worker (LHW) and social worker (SW) to assess and mitigate financial toxicity in a single academic medical clinic. As part of a quality improvement project, the LHW screened all newly diagnosed patients with advanced stages of prostate, kidney, or urothelial cancer for financial burden using three COST tool questions and referred patients who had significant financial burden to an SW who provided personalized recommendations. The primary outcome was feasibility defined as 80% of patients with financial burden completing the SW consult. Secondary outcomes were patient satisfaction, change in COST Tool responses, and qualitative assessment of financial resources utilized. RESULTS: The LHW screened a total of 185 patients for financial toxicity; 82% (n = 152) were male, 65% (n = 120) White, and 75% (n = 139) reported annual household income >$100,000 US Dollars; 60% (n = 114) had prostate cancer. A total of 18 (9.7%) participants screened positive for significant financial burden and were referred to the SW for consultation. All participants (100%) completed and reported satisfaction with the SW consultation and had 0.83 mean lower scores on the COST Tool post-intervention assessment compared to pre-intervention (95% confidence interval [0.26, 1.41]). CONCLUSION: This multidisciplinary financial toxicity intervention using an LHW and SW was feasible, acceptable, and associated with reduced financial burden among patients with advanced stages of urologic cancers. Future work should evaluate the effect of this intervention among cancer patients in diverse settings.

A Community-Engaged Process for Adapting a Proven Community Health Worker Model to Integrate Precision Cancer Care Delivery for Low-income Latinx Adults With Cancer.

INTRODUCTION: Disparities in precision cancer care delivery among low-income Latinx adults are well described. In prior work, we developed a community health worker-led goals of care and cancer symptom assessment intervention. The objective of this study was to adapt this intervention for a community setting, incorporating precision cancer care delivery. METHODS: We used a two-phased systematic approach to adapt an evidence-based intervention for our community. Specifically, we used the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework to identify barriers and facilitators to precision cancer care delivery via 1-hr interviews with Latinx adults with cancer, Latinx caregivers, community leaders, primary care and oncology clinicians, and community health workers. Interviews were recorded, transcribed, and analyzed using the constant comparative method and grounded theory analysis. Phase 2 involved interviews with key community advisors using the Expert Panels Method to decide on final adaptations. RESULTS: Using this community-engaged approach, we identified specific intervention adaptations to ensure precision cancer care delivery in a community setting, which included: (a) expansion of the intervention inclusion criteria and mode of delivery; (b) integration of low-literacy precision cancer care intervention activities in Spanish in collaboration with community-based organizations; (c) ensuring goals reflective of patient and community priorities. CONCLUSIONS: This systematic and community-engaged approach to adapt an intervention for use in delivering precision cancer care strengthened an evidence-based approach to promote the needs and preferences of patients and key community stakeholders.

Patient perspectives on window of opportunity clinical trials in early-stage breast cancer.

PURPOSE: Window of opportunity trials (WOT) are increasingly common in oncology research. In WOT participants receive a drug between diagnosis and anti-cancer treatment, usually for the purpose of investigating that drugs effect on cancer biology. This qualitative study aimed to understand patient perspectives on WOT. METHODS: We recruited adults diagnosed with early-stage breast cancer awaiting definitive therapy at a single-academic medical center to participate in semi-structured interviews. Thematic and content analyses were performed to identify attitudes and factors that would influence decisions about WOT participation. RESULTS: We interviewed 25 women diagnosed with early-stage breast cancer. The most common positive attitudes toward trial participation were a desire to contribute to research and a hope for personal benefit, while the most common concerns were the potential for side effects and how they might impact fitness for planned treatment. Participants indicated family would be an important normative factor in decision-making and, during the COVID-19 pandemic, deemed the absence of family members during clinic visits a barrier to enrollment. Factors that could hinder participation included delay in standard treatment and the requirement for additional visits or procedures. Ultimately, most interviewees stated they would participate in a WOT if offered (N = 17/25). CONCLUSION: In this qualitative study, interviewees weighed altruism and hypothetical personal benefit against the possibility of side effect from a WOT. In-person family presence during trial discussion, challenging during COVID-19, was important for many. Our results may inform trial design and communication approaches in future window of opportunity efforts.

Exploring cancer care needs for Latinx adults: a qualitative evaluation.

PURPOSE: Latinx adults with cancer, as compared with non-Latinx White adults, are diagnosed with more advanced stages and experience worse quality of life. Identifying barriers in cancer care among low-income Latinx adults is crucial to designing and implementing culturally appropriate interventions. The objective of this study was to explore the specific barriers encountered by Latinx adults after a cancer diagnosis and perspectives on the use of community health workers (CHWs) to address these barriers. METHODS: We conducted semi-structured qualitative interviews with low-income Latinx adults with a past or current history of cancer and/or their caregivers in a community oncology clinic located in an agricultural community in California. Analysis was based in grounded theory and performed using the constant comparative method. RESULTS: Sixteen interviews were conducted with patients alone (n = 11), a caregiver alone (n = 1), and patient-caregiver pairs (n = 4 patients; n = 4 caregivers). Four major themes emerged: (1) low cancer health literacy including cancer diagnosis and treatment, cancer fatalism, navigating next steps after diagnosis, advance directives, and precision medicine; (2) challenges in communicating and receiving supportive services due to language barriers; (3) stress and anxiety regarding financial hardships related to job loss, insurance barriers, and the COVID-19 pandemic; (4) the need for supportive, bilingual, and bicultural personnel to assist in overcoming these challenges. CONCLUSIONS: Low-income Latinx adults with cancer and their caregivers experience health literacy, communication, and financial barriers that impede quality cancer care delivery. Embedding CHWs in the care team could be one way to address these barriers to culturally concordant, accessible care.

Defining the clinician's role in mitigating financial toxicity: an exploratory study.

BACKGROUND: Financial toxicity describes the financial burden imposed onto patients by a cancer diagnosis and is a growing concern. Many clinicians do not currently address financial toxicity despite patients' desire for them to do so. Current literature explores physicians' perspectives but does not clearly define an actionable role clinicians can take to address financial toxicity. We sought to fill this gap by first assessing clinicians' perspective on their role in alleviating financial toxicity at our institution. We subsequently aimed to identify current barriers to mitigating financial toxicity and to garner feedback on clinician-oriented interventions to address this growing problem. METHODS: We developed an 18-item electronic, anonymous survey through Redcap. We invited all oncology clinicians including attending physicians, advance practice providers, and trainees at our institution to participate. RESULTS: A total of 72 clinicians (30%) completed the survey. The majority agreed that clinicians have a role in addressing cost. The top three barriers to discussing cost with patients were knowledge of out of pocket costs, time, and awareness of resources. Less than half of respondents used an existing comparative cost tool to incorporate cost consciousness into treatment decisions. The most desired intervention was an institutional resource guide. In open-ended comments, the most common barrier described was transparency of out of pocket costs, and the most common solution proposed was a multi-disciplinary approach to addressing financial concerns patient face. DISCUSSION: Improving price transparency, incorporating existing resources into clinical practice, and streamlining multi-disciplinary support may help overcome barriers to addressing financial toxicity.

Potentially avoidable hospitalizations after chemotherapy: Differences across medicare and the Veterans Health Administration.

BACKGROUND: The Centers for Medicare and Medicaid Services (CMS) has released quality measures regarding potentially avoidable hospitalizations visits in the 30 days after receipt of outpatient chemotherapy. This study evaluated the proportions of patients treated by Medicare-reimbursed clinicians and Veterans Health Administration (VA) clinicians who experienced avoidable acute care in order to evaluate differences in health system performance. METHODS: This retrospective evaluation of Medicare and VA administrative data used a cohort of cancer decedents (fiscal years 2010-2014). Cohort members were veterans aged 66 years or older at death who were dually enrolled in Medicare and the VA. Chemotherapy was identified through International Classification of Diseases, Ninth Revision and Current Procedural Terminology (ICD-9) codes. CMS defines avoidable hospitalizations as those related to anemia, dehydration, diarrhea, emesis, fever, nausea, neutropenia, pain, pneumonia, or sepsis in the 30 days after chemotherapy. Following CMS guidance, this study compared the proportions of patients with potentially avoidable hospitalizations, using hierarchical generalized estimating equations. RESULTS: There were 27,443 patients who received outpatient chemotherapy. Patients receiving Medicare chemotherapy were significantly more likely to have potentially avoidable hospitalizations than patients receiving VA chemotherapy (adjusted odds ratio, 1.58; 95% confidence interval, 1.41-1.78; P < .001). In predicted estimates, 7.1% of Medicare-treated veterans had potentially avoidable hospitalizations in the 30 days after chemotherapy, compared with 4.6% of VA-treated veterans. CONCLUSIONS: Results indicate veterans with cancer receiving chemotherapy in the VA have higher quality care with respect to avoidable hospitalizations than veterans receiving chemotherapy through Medicare. As more veterans seek care in the private sector under the Maintaining Internal Systems and Strengthening Integrated Outside Networks (MISSION) Act, concerted efforts may be warranted to ensure that veterans do not experience a decline in care quality.

Distribution of global health measures from routinely collected PROMIS surveys in patients with breast cancer or prostate cancer.

BACKGROUND: The collection of patient-reported outcomes (PROs) is an emerging priority internationally, guiding clinical care, quality improvement projects and research studies. After the deployment of Patient-Reported Outcomes Measurement Information System (PROMIS) surveys in routine outpatient workflows at an academic cancer center, electronic health record data were used to evaluate survey completion rates and self-reported global health measures across 2 tumor types: breast and prostate cancer. METHODS: This study retrospectively analyzed 11,657 PROMIS surveys from patients with breast cancer and 4411 surveys from patients with prostate cancer, and it calculated survey completion rates and global physical health (GPH) and global mental health (GMH) scores between 2013 and 2018. RESULTS: A total of 36.6% of eligible patients with breast cancer and 23.7% of patients with prostate cancer completed at least 1 survey, with completion rates lower among black patients for both tumor types (P < .05). The mean T scores (calibrated to a general population mean of 50) for GPH were 48.4 ± 9 for breast cancer and 50.6 ± 9 for prostate cancer, and the GMH scores were 52.7 ± 8 and 52.1 ± 9, respectively. GPH and GMH were frequently lower among ethnic minorities, patients without private health insurance, and those with advanced disease. CONCLUSIONS: This analysis provides important baseline data on patient-reported global health in breast and prostate cancer. Demonstrating that PROs can be integrated into clinical workflows, this study shows that supportive efforts may be needed to improve PRO collection and global health endpoints in vulnerable populations.

A Community-Partnered, Evidence-Based Approach to Improving Cancer Care Delivery for Low-Income and Minority Patients with Cancer.

Community-engaged adaptations of evidence-based interventions are needed to improve cancer care delivery for low-income and minority populations with cancer. The objective of this study was to adapt an intervention to improve end-of-life cancer care delivery using a community-partnered approach. We used a two-step formative research process to adapt the evidence-based lay health workers educate engage and encourage patients to share (LEAPS) cancer care intervention. The first step involved obtaining a series of adaptations through focus groups with 15 patients, 12 caregivers, and 6 leaders and staff of the Unite Here Health (UHH) payer organization, and 12 primary care and oncology care providers. Focus group discussions were recorded, transcribed, and analyzed using the constant comparative method of qualitative analysis. The second step involved finalization of adaptations from a community advisory board comprised of 4 patients, 2 caregivers, 4 oncology providers, 2 lay health workers and 4 UHH healthcare payer staff and executive leaders. Using this community-engaged approach, stakeholders identified critical barriers and solutions to intervention delivery which included: (1) expanding the intervention to ensure patient recruitment; (2) including caregivers; (3) regular communication between UHH staff, primary care and oncology providers; and (4) selecting outcomes that reflect patient-reported quality of life. This systematic and community-partnered approach to adapt an end-of-life cancer care intervention strengthened this existing intervention to promote the needs and preferences of patients, caregivers, providers, and healthcare payer leaders. This approach can be used to address cancer care delivery for low-income and minority patients with cancer.

Oncologists' Views on Using Value to Guide Cancer Treatment Decisions.

OBJECTIVES: Cancer costs have increased substantially in the past decades, prompting specialty societies to urge oncologists to consider value in clinical decision making. Despite oncologists' crucial role in guiding cancer care, current literature is sparse with respect to the oncologists' views on value. Here, we evaluated oncologists perceptions of the use and measurement of value in cancer care. METHODS: We conducted in-depth, open-ended interviews with 31 US oncologists practicing nationwide in various environments. Oncologists discussed the definition, measurement, and implementation of value. Transcripts were analyzed using matrix and thematic analysis. RESULTS: Oncologists' definitions of value varied greatly. Some described versions of the standard health economic definition of value, that is, cost relative to health outcomes. Many others did not include cost in their definition of value. Oncologists considered patient goals and quality of life as important components of value that they perceived were missing from current value measurement. Oncologists prioritized a patient-centric view of value over societal or other perspectives. Oncologists were inclined to consider the value of a treatment only if they perceived treatment would pose a financial burden to patients. Oncologists had differing opinions regarding who should be responsible for determining whether care is low value but generally felt this should remain within the purview of the oncology community. CONCLUSIONS: Oncologists agreed that cost was an important issue, but disagreed about whether cost was involved in value as well as the role of value in guiding treatment. Better clarity and alignment on the definition of and appropriate way to measure value is critical to the success of efforts to improve value in cancer care.

Poor performance status, urban residence and female sex predict inferior survival in pediatric advanced stage mature B-NHL in an Indian tertiary care center.

BACKGROUND: Advanced stage is a known prognostic factor in B-Non-Hodgkin Lymphoma (NHL); however, factors within advanced stage and overall data on pediatric B-NHL from India are lacking. METHODS: This is a retrospective study wherein all consecutive pediatric (≤18 years) patients of advanced stage B-NHL (St. Jude stage 3 and 4) treated at our center from Jan 2003 to June 2016 with BFM-90 protocol were evaluated for outcome and pathology review. RESULTS: Total 140 patients were analyzed with median age 8 years; M:F ratio was 5.2:1; 36% patients presented within 30 days of symptom onset and 58% had rural residence. Burkitt lymphoma (66%) was commonest histopathological subtype; bone marrow was involved in 15% and CSF in 8% cases. Undernourishment was observed in 30% patients and 51% had ECOG performance status of 3&4. At 5 years, EFS was 52 ± 4% (CI 0.43-0.60) and OS was 61 ± 4% (CI 0.52-0.68). On multivariate analysis, poor performance status (p < 0.001) and urban residence (p = 0.016) emerged as significant negative prognostic factors for EFS; while for OS, female sex (p = 0.006), poor performance status (p < 0.001) and urban residence (p = 0.023) predicted inferior outcome. CONCLUSION: This is the largest study from south Asia on advanced stage pediatric B-NHL and it suggests undernourishment, poor performance status and gender bias to be unique features at presentation. Although, outcomes are comparable with other data from resource-challenged nations, yet they are 15-20% inferior than trial data from other developed countries. Further, poor performance status, female sex and urban residence for poor outcome were identified as unique prognostic factors.

Randomized Trial of a Volunteer-Led Symptom Assessment Intervention on Documentation, Patient-Reported Outcomes, and Health Care Use Among Veterans With Lung Cancer.

PURPOSE: Identification and documentation of Veterans' symptoms are crucial for optimal lung cancer care delivery. The objective of this study was to determine whether a volunteer-led proactive telephone symptom assessment intervention could improve comprehensive symptom documentation. METHODS: Veterans with lung cancer were randomly assigned to usual care (control group) or usual care with proactive symptom assessment in which a peer volunteer made weekly phone calls to assess patient symptoms under nurse practitioner supervision. The primary outcome was oncologist documentation of symptoms in the electronic health record at all clinical visits within 6 months after enrollment. Secondary outcomes included patient satisfaction with decision, patient activation, health-related quality of life (HRQOL), and symptom burden, measured at baseline, and 3, 6, and 9 months after enrollment, and acute care use within 9 months after enrollment. RESULTS: Among 60 Veterans randomly assigned, median (range) age was 70.2 (50-86) years; 57 (95.0%) were male. More intervention participants had oncologist documentation of symptoms than control group participants (24 [77.4%] v seven [24.1%], respectively; odds ratio, 16.46 [95% CI, 4.58 to 59.16]). Intervention group participants had greater improvements over time in HRQOL (expected mean difference, 25.3 [95% CI, 15.00 to 35.70]) and patient activation (expected mean difference, 13.6 [95% CI, 3.79 to 23.39]), lower symptom burden (expected mean difference, -6.39 [95% CI, -15.21 to -2.46]), lower rates of emergency room visits (incidence rate ratio, 0.48 [95% CI, 0.30 to 0.75]), and hospitalizations (incidence rate ratio, 0.47 [95% CI, 0.28 to 0.77]) than control group participants. CONCLUSION: This symptom assessment intervention is an effective strategy for Veterans with lung cancer.

Chewing Doma (Fermented Betel Nut): Culture versus Cancer?

Dr. Amol PatelAreca nut consumption is embedded in many cultures, including that of Bhutan, several parts of India, and other South Eastern countries. Traditional fermenting of areca nut results in the production of what is called doma in Bhutan. The process enhances its carcinogenic potential and is tightly linked to oral and upper gastrointestinal cancers. As many as 45% of Bhutanese people chew doma. It is the number one cause of cancers of the oral cavity, oropharynx, hypopharynx, and larynx. We propose the slogan "Don't chew your way to cancer, say no to doma" would help in reducing oral and esophageal cancers in Bhutan.

Let Us Have the Conversation: Serious Illness Communication in Oncology: Definitions, Barriers, and Successful Approaches.

Serious illness communications are crucial elements of care delivery for patients with cancer. High-quality serious illness communications are composed of open, honest discussions between patients, caregivers, and clinicians regarding patient's communication preferences, expected illness trajectory, prognosis, and risks and benefits of any recommended care. High-quality communication ideally starts at the time of a patients' cancer diagnosis, allows space for and response to patient emotions, elicits patients' values and care preferences, and is iterative and longitudinal. When integrated into cancer care, such communication can result in improved patient experiences with their care, care that matches patients' goals, and reduced care intensity at the end of life. Despite national recommendations for routine integration of these communication into cancer care, a minority of patients with cancer receive such communication. In this chapter, we describe elements of high-quality serious illness communication, patient-, clinician-, institution-, and payer-level barriers, and successful strategies that can routinely integrate such communication into cancer care delivery.

Racial and Ethnic Disparities in Intensity of Care at the End of Life for Patients With Lung Cancer: A 13-Year Population-Based Study.

PURPOSE: Lung cancer is the leading cause of cancer death in the United States. Disparities in lung cancer mortality among racial and ethnic minorities are well documented. Less is known as to whether racial and ethnic minority patients with lung cancer experience higher rates of intensity of care at the end of life (EOL) compared with non-Hispanic White (NHW) patients. METHODS: We conducted a population-based analysis of patients 18 years and older with a lung cancer diagnosis who died between 2005 and 2018 using the California Cancer Registry linked to patient discharge data abstracts. Our primary outcome was intensity of care in the last 14 days before death (defined as any hospital admission or emergency department [ED] visit, intensive care unit [ICU] admission, intubation, cardiopulmonary resuscitation [CPR], hemodialysis, and death in an acute care setting). We used multivariable logistic regression models to evaluate associations between race and ethnicity and intensity of EOL care. RESULTS: Among 207,429 patients with lung cancer who died from 2005 to 2018, the median age was 74 years (range, 18-107) and 106,821 (51%) were male, 146,872 (70.8%) were NHW, 1,045 (0.5%) were American Indian, 21,697 (10.5%) were Asian Pacific Islander (API), 15,490 (7.5%) were Black, and 22,325 (10.8%) were Hispanic. Compared with NHW patients, in the last 14 days before death, API, Black, and Hispanic patients had greater odds of a hospital admission, an ICU admission, intubation, CPR, and hemodialysis and greater odds of a hospital or ED death. CONCLUSION: Compared with NHW patients, API, Black, and Hispanic patients who died with lung cancer experienced higher intensity of EOL care. Future studies should develop approaches to eliminate such racial and ethnic disparities in care delivery at the EOL.

Effect of a Community Health Worker-Led Intervention Among Low-Income and Minoritized Patients With Cancer: A Randomized Clinical Trial.

PURPOSE: To determine whether a community health worker (CHW)-led intervention could improve health-related quality of life (HRQoL; primary outcome) more than usual care among low-income and racial and ethnic minoritized populations newly diagnosed with cancer. METHODS: This randomized clinical trial was conducted from November 1, 2018, until August 31, 2021, in outpatient cancer clinics in Atlantic City, NJ, and Chicago, IL. Hourly low-wage worker members of an employer union health fund age 18 years or older with newly diagnosed solid tumor and hematologic malignancies were randomly assigned 1:1 to usual care (control group) or usual care augmented with a trained CHW for 12 months (intervention group). The CHW assisted participants with advance care planning (ACP), proactively screened symptoms, and referred participants to community-based resources for identified health-related social needs. Usual care comprised nurse case management and benefits redesign (waived copayments and free transportation for any cancer care received at preferred oncology clinics in each city). The primary outcome was HRQoL. Secondary outcomes included patient activation, satisfaction with decision, ACP documentation, health care use, total health care costs, and overall survival. RESULTS: A total of 160 participants were enrolled. Intervention group participants had a greater increase in mean HRQoL scores at 4-month and 12-month follow-up as compared with baseline than control group participants (expected mean difference, 11.25 [95% CI, 7.28 to 15.22]; 11.29 [95% CI, 6.96 to 15.62], respectively). CONCLUSION: In this randomized trial, a CHW-led intervention significantly improved HRQoL for low-income and racial and ethnic minoritized patients with cancer more than usual care alone.

Long-Term Engagement of Patients With Advanced Cancer: Results From the EPAC Randomized Clinical Trial.

Importance: The long-term effect of interventions that assist patients with establishing their end-of-life care preferences among patients with cancer remain relatively unknown. Objective: To evaluate the association of a long-term intervention of a lay health worker-led advance care planning intervention among patients with advanced stages of cancer with overall survival and end-of-life health care use and costs. Design, Setting, and Participants: This follow-up study of the EPAC randomized clinical trial conducted between August 2013 and February 2015 used data from 9.4 years after the first patient was enrolled with a data cut-off date of February 1, 2023. Overall, 213 participants with stage 3 or 4 or recurrent cancer in the US Veterans Affairs Palo Alto Health Care System were included. Interventions: A 6-month lay health worker-led education and support intervention to assist patients with establishing their end-of-life preferences vs usual care. Main Outcomes and Measures: The outcomes of interest were overall survival, risk of death, restricted mean survival time, and palliative care, hospice, and acute care use in the final 30 days before death for participants who died. Results: Among 213 participants randomized and included in the intention-to-treat analysis, the mean (SD) age was 69.3 (9.1) years; 211 (99.1%) were male, 2 (0.90%) were female. There were no demographic or clinical characteristic imbalances at enrollment. As of February 1, 2023, 188 had died. The intervention group had a 25% reduction in risk of death (hazard ratio, 0.75; 95% CI, 0.56-0.98); more palliative care (44 [50.0%] vs 35 [35.0%]) and hospice use (64 [72.7%] vs 53 [53.0%]); and lower emergency department use (20 [22.7%] vs 47 [47.0%]), hospitalizations (17 [19.3%] vs 46 [46.0%]), and median (IQR) total health care costs (median [IQR], $1637 [$383-$9026] vs $18 520 [$4790-$50 729]) than control group participants. Conclusions and Relevance: The effects of the lay health worker-led intervention remain durable, with nearly complete follow-up, supporting integration into routine cancer care. Trial Registration: ClinicalTrials.gov Identifier: NCT02966509.