bluuebunny/crossref_metadata_2025_split huggingface dataset:
Changes in cancer mortality rates after Medicaid expansion under the Affordable Care Act and the role of changes in stage at diagnosis.
Authors: Barnes Justin Michael , Johnson Kimberly J. , Osazuwa-Peters Nosayaba , Chino Fumiko 
Published: September 2022

74 Background: Medicaid expansion is associated with earlier cancer diagnoses and improved cancer survival. However, it is unclear if the expansion-associated survival benefits are driven primarily by early detection leading to improved prognosis and/or increased access to appropriate cancer care. A nationwide analysis was performed to determine the degree to which expansion-associated changes in cancer mortality rates can be explained by changes in stage at diagnosis. Methods: State-level cancer incidence and mortality data from 2001-2019 for individuals ages 20-64 years were obtained from the combined Surveillance, Epidemiology, and End Results and National Program of Cancer Registries databases (incidence) and the National Center for Health Statistics (mortality), which cover the 50 US States and Washington DC. Difference-in-differences analyses were conducted to compare changes in localized and distant stage cancer incidence rates and cancer mortality rates from pre- vs. post-2014 in expansion vs. non-expansion states. We utilized generalized estimating equations to account for autocorrelation within states and adjusted for age, race, sex, year, state, early Medicaid expansion effects, and state-level covariates (unemployment, education, poverty, race/ethnicity, and insurance). Analyses were conducted overall and by cancer site subtype. Mediation analyses were utilized to assess whether local and/or distant stage diagnosis rates were mediators of the changes in cancer mortality rates. Results: The data consisted of 16,470 state-year observations stratified by age, sex and race. In our adjusted analyses with all cancer sites combined, there were decreases in the distant stage cancer incidence rate (OR: 0.966, 95% CI = 0.942 - 0.991, P=.009) and cancer mortality rate (OR: 0.974, 95% CI = 0.950 - 0.999, P=.041) after Medicaid expansion in expansion relative to non-expansion states. There were no expansion-associated changes in localized cancer incidence rates (OR: 0.989, P=.45). Changes in distant stage cancer incidence mediated 26% of the expansion-associated change in cancer mortality ( P=.013). By cancer site, there were Medicaid expansion-associated decreases in cancer mortality rates for breast (OR: 0.954, P<.001), cervical (OR: 0.934, P=.020), and colorectal (OR: 0.945, P=.045) cancers, though local or distant stage incidence rates were not found to be statistically significant mediators. Conclusions: Medicaid expansion was associated with decreased metastatic stage cancer incidence and decreased overall cancer mortality. Approximately 25% of the improvements in cancer mortality can be attributed to decreases in metastatic diagnoses suggesting increased rates of curative-intent treatment, amongst other factors. Remaining survival benefits may reflect access to timely, quality cancer care not captured in this analysis.
Factors influencing “no treatment” decisions in advanced stage cancers.
Authors: Akpoviroro Ogheneyoma , Akpoviroro Oghenetejiro Princess , Uwandu Queeneth , Yossef Kristena , Suastegui Steven , Castagne Myriam , Rodrigues Elga , Bolden Brian , Mirza Wasique 
Published: September 2022

77 Background: Several studies have attempted to explore treatment refusal in patients with cancer (CA). We performed a study that focused on patients with advanced CAs, characterizing those in this group that refused therapy. Based on this study, we sought to determine if some variables significantly correlated with ‘no treatment’ decisions, compared with a group of similar patients who accepted therapy. Methods: Our inclusion criteria were patients aged 18-75 years, diagnosed with stage IV CAs (per the American Joint Committee on Cancer staging) between 1/1/2010 and 12/31/2015 and refused therapy (Cohort 1). A randomly selected group of patients with stage IV CAs who accepted treatment in the same timeframe were used for comparison (Cohort 2). We used Proc SurveySelect and a simple random sampling method to create Cohort 2. Geisinger Health System’s data was used. Results: We found 508 patients for cohort 1, and 100 patients for cohort 2. The significance level was < 0.05. Female sex was associated with treatment acceptance (51/100, 51.0%) compared with refusal (201/508, 39.6%); p = 0.03. There was no association between treatment decision and race, marital status, BMI, tobacco use, previous CA history, or family CA history. Government-funded insurance was associated with therapy refusal (337/508, 66.3%) than acceptance (35/100, 35.0%); p < 0.0001. Cohort 1 had an older population compared with cohort 2 (p < 0.0001). The mean age of cohort 1 was 63.1 years (standard deviation (σ) 8.1), and 59.2 (σ 9.9) in cohort 2. The most common malignancy site in both cohorts was the respiratory system but this was not related to treatment decisions. Patients with pancreatic CA tended to refuse treatment (p = 0.0009). Only 19.1% (97/508) in cohort 1 were referred to palliative medicine, with 18% (18/100) in cohort 2; p = 0.8. There was an insignificant trend for patients who accepted treatment to have more comorbidities per the Charleston Comorbidity Index (CCI) (p = 0.08). The mean CCI in cohort 1 was 6.5 (σ 3.7), and 8.0 (σ 3.9) in cohort 2. Treatment of psychiatric disorders after CA diagnosis was inversely associated with treatment refusal (p < 0.0001). Conclusions: Male sex, older age, government-funded health insurance, and pancreatic CAs were associated with treatment refusal in advanced CA patients. Those who refused treatment were not increasingly referred to palliative medicine. Treatment of psychiatric disorders after CA diagnosis was associated with treatment acceptance.[Table: see text]
Underrepresented minority clinical trial participation: Perspectives of the research care team and patients.
Authors: Warner Erica T. , Revette Anna C. , Lormil Brenda , Booz Natalie A , Vora Kruti Bhagirath , Haas Jennifer , Moy Beverly 
Published: September 2022

93 Background: Clinical trials (CT) are important treatment options for patients with cancer, yet enrollment rates among underrepresented minority (URM) patients remain suboptimal. Oncology care teams need to assess barriers and facilitators of CT participation and identify practices and resources to better support patients. As part of a larger mixed-methods project, we elicited perspectives on improving URM CT enrollment from oncology research care teams and patients. Methods: We conducted four 60-minute focus groups with 12 oncology physicians, 12 research nurses, and nine clinical research coordinators, and semi-structured interviews with nine URM CT patients at a large academic medical center between January and December 2021. Results: Thematic analysis of the focus groups and interviews identified multiple barriers and potential resources and supports at the patient, healthcare team, institutional, and trial design levels. Barriers included difficulty ensuring patient understanding and informed consent, especially among patients with low health literacy and limited-English proficiency, complex logistical and financial demands of CT participation for patients, and the lack of multidisciplinary oncology care team collaboration. Collectively, these barriers undermined communication, trust, and the quality of patients’ relationships with the care team, all affecting CT participation. Suggested resources and practices included proactive needs assessments for all patients with early engagement of social workers, providing a liaison or navigator for each patient, services and support to reduce patient out of pocket costs, expansion of non-English materials availability and increased used of interpreters, increased training and diversity for all care team roles, and simplifying CT requirements by streamlining informed consent documents, eliminating unnecessary CT-related appointments, and broadening eligibility criteria. Conclusions: Findings suggest that changes in clinical trial design, care team coordination, and early assessment and monitoring of patients’ needs and experiences may help reduce access barriers and increase enrollment of URM patients into cancer CTs.
Decentralized and hybrid trials in oncology: Results of a global survey of clinical research executives.
Authors: Beg Shaalan Shaalan , Bustos Drew 
Published: September 2022

102 Background: Decentralized (DCT) and hybrid (Agile) clinical trials have the potential to deliver significant enhancements to trial operations by improving access to patients and providers. We conducted a survey of research executives at sponsor sites and contract research organizations (CRO) to understand trends in oncology clinical trials. Methods: The survey took place in March and April 2022 via online questionnaires. Only complete responses from senior executives who are either involved in sponsoring or managing clinical research within oncology, or who are planning to execute oncology clinical trials in future, were included. Response data were analyzed by an independent market research service and tested for significance at the 95% confidence level. Results: The questionnaires generated a “qualified” respondent sample of 85 responses. Most (60%) respondents were from biopharmaceutical sponsors, with around one-third from organizations with more than US$20 billion in revenue. The most frequent perceived challenges for oncology clinical trials execution were patient recruitment (72% of execs ranked this in their top 3); study start-up (55%); and study delays (54%). Three in four executives (73%) are planning to run either a DCT or hybrid trial for oncology in the next 12 months, up significantly from 49% in the prior 12 months. Most common cancer indications for DCT in the next 12 months are lung cancer (40%), leukemia/blood cancers (37%), and breast cancer (30%). More than half of respondents reported that they plan to include ePRO/eCOA tools (57%) and telemedicine (54%) in their oncology clinical trial designs over the next 12 months. A further 48% expect to deploy Mobile Nurses, with the same number planning to incorporate eConsent. The top three perceived benefits of using DCT tools identified in oncology trials are increased patient retention (67%); greater patient diversity (54%); and faster patient recruitment (50%). Conclusions: The survey of oncology research executives highlights the most common perceived challenges in executing clinical trials. Many of these challenges can be addressed using decentralized tools. Researchers are planning to significantly increase the adoption of DCT in the coming year. DCT adoption in oncology clinical trials Prev 12 mos Next 12 mos Traditional, Site-Based Trial 88% 65% Agile Trial (Hybrid) 43% 58% Fully Decentralized Trial 19% 40% Agile Trial OR Fully Decentralized Trial 49% 73%.
Barriers to cancer prevention among women experiencing homelessness who receive onsite mammography, patient navigation, and education (HOPE).
Authors: Hurwitz Heather McKee , Anderson NaSheema , McCaffrey Kate , Combs Pamela , Jackson Raymond D. , Kilic Sarah S , Mariner Markayla , Onger Tiffany , Sanders Kimberly , Stimpert Tyler , Suwarna Jeremy , Weleff Jeremy , Shah Chirag S. 
Published: September 2022

111 Background: While incidence rates of cancer are lower among women experiencing homelessness (WEH), cancer mortality remains higher. Barriers to screening include economic, transportation, housing, childcare and other barriers. This study evaluates barriers to mammographic screening as part of a prospective program that provides onsite mammography services to WEH. Methods: Cleveland Clinic partnered with shelters to provide breast health education, patient navigation, and mobile mammograms onsite at shelters. Also, participants received a meal, a bra, and hygiene items. 75 women and persons of other genders completed a mammogram. 55 WEH participated in the study by completing a survey for a response rate of 73.3%. The survey included questions about barriers and demographics. We conducted a preliminary analysis to improve study quality and plan for a follow up study. Results: Participants were 40-75 years old and identified as American Indian/Alaska Native (5.5%), Black/African American (60%), and White (40%). 16% of participants received their first ever mammogram. 34% noted a family history of breast cancer and 22% had previously been advised to return for additional imaging. One participant was a breast cancer survivor. On average, participants’ last mammogram was four years prior with the greatest screening lapse being 18 years prior. A majority (n = 39, 70.9%) disagreed or strongly disagreed with the statement, “I’m afraid the mammogram will be painful.” Likewise, a majority (n = 46, 83.7%) disagreed or strongly disagreed with the statement, “I’m embarrassed about having a mammogram.” A majority (n = 44, 80.0%) also disagreed or strongly disagreed with the statement, “I’m busy and do not have time.” Almost all participants (n = 51, 96.2%) responded “yes” to the statement, “I believe in preventative care screenings.” However, participants’ responses to the statement, “I’m afraid of finding breast cancer” varied widely from strongly disagree (n = 7, 13.0%) and disagree (n = 10, 18.5%), to neutral (n = 15, 27.8%), to agree (n = 12, 22.2%) and strongly agree (n = 10, 18.5%). Conclusions: Our preliminary data shows that most participants believe in preventative screening, showing that novel services such as onsite mammography may address the lack of screening in this population. 40.7% of participants stated they are afraid of finding breast cancer, indicating this is a barrier to screening in the WEH population. Future research should explore reasons for fear (financial burden, mortality, lack of access to care, etc.) and why this may result in a lack of screening.
Cancer treatment delays among patients with cancer living with HIV during the COVID-19 pandemic in the United States.
Authors: Khouri Ashley , Islam Jessica Yasmine , Van Bibber Nathan , Coghill Anna , Suneja Gita 
Published: September 2022

131 Background: The COVID-19 pandemic led to care disruptions across the cancer continuum. It is unknown if immunosuppressed patients with cancer who may be at high risk for SARS-CoV-2 infection were disproportionately impacted. Our objective was to compare delays in cancer treatment initiation between people living with HIV (PLWH) and cancer, the general cancer population (GCP), and patients with cancer and a history of solid organ transplant (SOT), another immunosuppressed patient population. Methods: We used data from Flatiron Health electronic health record-derived de-identified database (2018-2021) comprised of US patients with cancer from 800 sites of care across the country. We included patients with lymphomas, myeloma, and melanoma, as well as cancers of the breast, lung, prostate, head & neck, and gynecologic or gastrointestinal systems. We calculated time to cancer treatment initiation (TTI) as the difference between the date of cancer diagnosis and the earliest date that one of the following treatments was recorded: cell based treatment, other local treatment, radiotherapy, surgery, systemic therapy, or transplant. 16.4%, 19.9%, and 13.3% of the GCP, PLWH, and SOT groups, respectively, did not have treatment information in the database. This may have been due to no receipt of treatment or lack of data in the medical record. All analyses reported were conducted among patients with available treatment data. PLWH and those with a history of SOT were selected using ICD 9/10 codes. After adjusting for age, sex, and metastatic disease (yes/no), we used a difference-in-difference analysis to compute TTI for each study group both prior to and during the COVID-19 pandemic. We then determined whether study group differences in cancer patient TTI (e.g., HIV-associated treatment delays) changed during the pandemic. Results: The sample included 181 PLWH, 65073 GCP patients, and 195 patients with a history of SOT. Overall, no significant delay in TTI was seen between the three groups pre-COVID. However, during the pandemic, the TTI was statistically significantly delayed for PLWH compared to the HIV-uninfected GCP (median TTI 41 days vs. 27 days, p = 0.0017). No significant difference was observed overall between the GCP and the SOT group (median TTI 27 days vs. 20 days, p = 0.376), evidence that COVID-related treatment delays were specific to PLWH. Difference in difference analysis revealed that, when compared to the GCP, there was a significant increase in TTI among PLWH over time, with delays increasing by almost one month during COVID [DID: 32.6 days (8.9-56.3); p = 0.007]. The increase in TTI for PLWH was consistent across treatment modalities, including surgery (DID: 55.1, 95% CI: 28.8-81.3, p < 0.001) and systemic therapy (DID: 30.4; 95% CI: 4.6-56.3, p = 0.021). Conclusions: PLWH and cancer experienced significant delays in cancer treatment initiation after diagnosis during the COVID-19 pandemic.
Trends in the improvement in survival among patients with diffuse large B-cell lymphoma (DLBCL).
Authors: MacDougall Kira , Day Silas , Nipp Ryan David , Hall Spencer , Zhao Yan D. , Al-Juhaishi Taha 
Published: September 2022

147 Background: Advances in treatment for patients with DLBCL have led to improved patient outcomes, but whether disparities exist with regards to improved survival outcomes remains understudied. We sought to describe changes in DLBCL survival rates over time and explore potential differential survival patterns by patients’ race and age. Methods: We utilized the Surveillance, Epidemiology, and End Results (SEER) database to identify patients diagnosed with DLBCL from 1980-2009 and determined 5-year survival rates for all patients, categorizing patients by year of diagnosis. We used descriptive statistics and logistic regression, adjusting for stage and year of diagnosis, to describe changes in 5-year survival rates over time by race/ethnicity and age. Results: We identified 43,564 patients with DLBCL eligible for this study (median age 67 years [ages: 18-64 = 44.2%, 65-79 = 37.1%, 80+ = 18.7%], 53% male, 40% stage III/IV). Most were White race (81.4%), followed by race/ethnic groups of Asian/Pacific Islander (API) (6.3%), Black (6.3%), Hispanic (5.4%), and American Indian/Alaska Native (AIAN) (0.05%). Overall, the 5-year survival rate improved from 35.1% in 1980 to 52.4% in 2009 across all patients (odds ratio (OR) for 5-year survival with increasing year of diagnosis = 1.05, p <.001). Patients in race/ethnic minority groups (API: OR = 0.86, p <.0001; Black: OR = 0.57, p <.0001; AIAN: OR = 0.51, p =.008) and older adults (ages 65-79: OR = 0.43, p <.0001; ages 80+: OR = 0.13, p <.0001) had worse 5-year survival rates adjusting for race, age, stage, and diagnosis year. We found consistent improvement in the odds of 5-year survival for year of diagnosis across all race and ethnicity groups (White: OR = 1.05, p <.001; API: OR = 1.04, p <.001; Black: OR = 1.06, p <.001; Hispanic: OR = 1.05, p <.005; AIAN: OR = 1.05, p <.001) and age groups (ages 18-64: OR = 1.06, p <.001; ages 65-79: OR = 1.04, p <.001; ages 80+: OR = 1.04, p <.001). Conclusions: In this analysis of SEER data, we found that patients with DLBCL experienced improvements in 5-year survival rates from 1980 to 2009, despite ongoing disparities demonstrating worse survival among patients in race/ethnic minority groups and older adults. Notably, we did not find differential improvement in the odds of 5-year survival within subgroups of race and age, underscoring the need for ongoing investigations to address disparities in cancer care delivery and outcomes.
Disparities in place of death from prostate cancer revealed by disaggregation of Asian race.
Authors: Noveihed Alexandra , Lall Naveena , Hussaini S. M. Qasim , Kuo Pei-Lun , Blackford Amanda L. , Gupta Arjun , Sedhom Ramy 
Published: September 2022

187 Background: Place of death (PoD) is a surrogate determinant of health care inequity in patients with cancer. Aggregation of Asian Americans, a diverse group, may mask significant health disparities in end-of-life care. Methods: De-identified death certificate data were obtained via the National Center for Health Statistics. All adult (> 18 years of age) prostate cancer deaths from 2018 to 2019 were included. Multinomial logistic regression was used to test for differences in place of death associated with sociodemographic variables. Results: From 2018 through 2019, 81,292 adults died from prostate cancer. Overall, most Asians were less likely to die at home (p < 0.05) or nursing facility (p < 0.05) compared to White patients. Significant differences in nursing facility use was noted in disaggregated analysis, with Samoan patients 12.44 times more likely to die in a hospice facility compared to hospital (CI 2.89, 53.6; p < 0.001) and Chinese patients 100 times less likely to die in a hospice facility (CI 0.01, 0.02; p < 0.001) to give two notable examples. Chinese (OR 0.26), Guamanian (OR 0.2), and Vietnamese race (OR 0.05) had the lowest likelihood of dying at home, with odds ratio lower than Black race (OR 0.3) (Table). Conclusions: Increased attention to PoD over recent years has highlighted issues around equity in end-of-life care. Overall, our data underscore important differences among Asian subpopulations and possible barriers to quality end of life care that would otherwise be masked with data aggregation. It is well known that resources are needed to allow death at home or at a nursing facility. Further qualitative work is planned to investigate culture differences contributing to PoD differences for patients with cancer through the lens of the social determinants of health.