bluuebunny/crossref_metadata_2025_split huggingface dataset:
Drivers of palliative care and hospice use among patients with advanced lung cancer.
Authors: Edmonds Megan C. , Jain Mayuri , Mazor Melissa , Morillo Jose , Augustin Marsha , Allen Olivia S. , Avril Amina , Smith Cardinale B. 
Published: September 2022

79 Background: Despite rigorous evidence of improved quality of life and longer survival, disparities in the utilization and quality of palliative and hospice care persist for racial and ethnic minority (Black and Latinx) patients with advanced lung cancer. To better understand drivers of palliative care and hospice inequities, this study evaluated the impact of psychosocial factors (e.g., lung cancer beliefs) on palliative and hospice care utilization among minority patients with cancer. Methods: This was a prospective cohort study of 99 patients with advanced lung cancer recruited at the Mount Sinai Hospital. At enrollment, minority and non-minority patients were asked questions about their sociodemographic, clinical, and the following psychosocial factors: medical mistrust, lung cancer beliefs, palliative care and hospice beliefs. Palliative care and hospice care utilization was abstracted from patients’ medical records. Bivariate analysis examined the association between independent factors (e.g., sociodemographic, lung cancer beliefs) and outcomes of palliative care consult and hospice care use (yes vs. no). Results: Of the 99 enrolled participants, 55 (55%) were minorities with a mean age of 65 years. 42% completed a palliative care consult and 26% utilized hospice care (26%). Palliative care utilization was associated with more favorable beliefs toward palliative care (p = 0.022) and hospice (p = 0.005) and lower levels of medical mistrust (p = 0.007). Majority of the sample was not refered to palliative (50%) or hospice care (61%); however patients refered were more likely to utilize care (p < 0.001). Minority patients were more likely to receive a referral and schedule a palliative care consultation compared to non-minorities (p < 0.001). Self-reported minority status did not predict differences in hospice care use. Conclusions: Minority patients with lung cancer were more likely to receive a palliative care referral and specialty level consultation when compared to non-minority patients. Higher levels of mistrust were a driver of not receiving palliative care. Patient referrals appear to be an important leverage point to help mitigate disparities in palliative and hospice care use. Future work to understand factors associated with palliative care use and the impact on minority patients is needed.
System-level barriers and facilitators to cancer rehabilitation delivery for children with cancer.
Authors: Swartz Maria Chang , Kelly Donna M. , Schadler Keri L. , Andersen Clark R. , Wells Stephanie J. , Zhang Shiming , Rajan Alakh , Heaton Amy , Moody Karen 
Published: September 2022

81 Background: Up to 20% of childhood cancer survivors suffer from a significant physical function impairment due to cancer or cancer treatment. Early intervention with Occupational Therapy (OT) and Physical Therapy (PT) increases engagement in personal care, leisure interests, school-based tasks, return to work, and prevents cognitive decline. Despite this, less than 30% of childhood cancer survivors receive PT services. To date, facilitators and barriers to implementing cancer rehabilitation (CR) for pediatric cancer survivors have not been adequately explored. Thus, the aim of this research was to identify system-level barriers and facilitators to CR delivery based on surveys completed by hospital administrators, oncology physicians, advanced practice providers, and OT/PT therapists. Methods: A cross-sectional method was employed. Three previously published cardiac rehabilitation delivery instruments specific for administrators, OT/PT therapists and clinical providers respectively were adapted to evaluate CR delivery. All surveys used a 5-point Likert-type response format (e.g., 1 = strongly disagree to 5 = strongly agree). Surveys ranged from 12 items (therapist survey) to 23 items (administrator survey). Questions pertained to knowledge, attitudes, and perceptions regarding CR. Results: A total of 20 administrators (mean age, 49.95 years old, 65% non-Hispanic White, 65% female), 20 providers (mean age, 43.4 years old, 71.4% non-Hispanic White, 67% female), and 20 therapists (mean age, 38.3 years old, 70% non-Hispanic white, 84% female) completed surveys. Administrators’ results indicated mid-range CR knowledge (median: 3.5; IQR 2,5), and all perceived CR as important or extremely important to outpatient care (median: 5; IQR 4,5). Limited insurance coverage and lack of space were the top barriers identified by administrators. Eighty percent of providers endorsed that clinical practice guidelines promote CR referral (median 4; IQR 4,5) and none reported being skeptical of CR benefits. Provider-identified barriers included an inconvenient referral process, lack of CR patient-education materials, and inadequate information on external CR resources. Therapists identified rate of absenteeism and referral rates as barriers to CR. Ninety percent of therapists reported hybrid CR delivery (supervised and unsupervised exercise) could facilitate CR participation (median 4; IQR 4,4). Conclusions: System-wide, there was adequate knowledge and positive perceptions and attitudes regarding CR. However, we identified multiple barriers presenting opportunities for multilevel interventions. These included: insurance coverage advocacy, streamlining referral processes to CR services, providing information on external CR programs, providing patient education materials, and leveraging hybrid CR delivery to optimize participation.
How granularity of data matters in understanding and accelerating racial diversity in U.S. clinical trials.
Authors: Bebi Ted , Horovitz Rachel , Blum Kevin , Buderi Robbie , Bourlon Pierre-Louis , Lamont Elizabeth W. , Chamberlain Stephanie , Melhem Fareed 
Published: September 2022

88 Background: Historically, US clinical trials have been shown to recruit disproportionately large percentages of White patients, raising concerns about the generalizability of clinical trial results to underrepresented racial minority patient populations. Because of this, the FDA has recently reiterated its guidance stating that clinical trials need to reflect the demographic distribution of the US. In this research, we sought to understand how participation of Black patients varies by therapeutic area and geography within the US. Methods: Studying patient-level clinical trial data from an industry-leading historical clinical trial data repository of over 8 million patients from 27,000 clinical trials, we assessed the racial composition of US interventional trials across indications from 2010 to 2021 which encompassed 433,822 clinical trial participants across 2,997 trials. We also analyzed participants’ racial composition within the subset of trials from three distinct therapeutic areas (i.e., oncology n = 118,194, cardiovascular n = 12,281, central nervous system n = 35,533) and distinct sites over the same period. Results: The racial distribution of clinical trial participants in the US across all therapeutic areas was 78% White, 15% Black, and 3% Asian. Within the three distinct therapeutic areas, the proportion of Black clinical trial participants varied, with oncology trials reporting 8.5% Black participants, cardiovascular trials reporting 15.3% Black participants, and central nervous system trials reporting 19.9% Black participants. Black participation also varied within a therapeutic area, depending on the indication, as well as by site, with individual sites contributing differently to the racial diversity of trials. Conclusions: Our analysis shows that US interventional trials enroll 15% Black participants, appearing consistent with the 2020 US Census, which estimates that 14.6% of Americans are Black. However, more granular analyses at the level of therapeutic area, indication and site suggest substantial variation in Black participation in clinical trials including a gap in Black representation in oncology trials vs. US Census estimates. This research suggests that aggregate estimates of racial enrollment may mask dramatic variation by other factors like granularity of disease area and geographic location. The study of historic clinical trial data may yield useful insights for accelerating diverse representation in clinical trials.
Improving participation of under-represented minorities in breast cancer therapeutic trials in a safety-net system.
Authors: Qureshi Nasir , Robles Fabian E. , Unni Nisha , Syed Samira K. , Li Hsiao Ching , Sadeghi Navid 
Published: September 2022

90 Background: Racial and ethnic minorities remain under-represented in cancer clinical trials. Strategies to improve access and participation of diverse populations in clinical trials is therefore a key step to improve outcomes and eliminate disparities. Methods: Parkland Health (PH) is the safety-net system for Dallas County, Texas, and is affiliated with the UT Southwestern/Harold C. Simmons Comprehensive Cancer Center (SCCC). Trial operations at PH is mainly supported by a dedicated team of SCCC research coordinators. Interventions employed to increase minority access and accruals were focused on optimizing the portfolio, increasing provider awareness, and enhanced screening. A bilingual research patient navigator was also added to the research team to improve patient education and engagement. Transportation and childcare assistance are routinely provided for patients at PH. Accrual data for 2021, compared to 2017-2020, is presented here. Results: The majority (73%) of breast cancer patients at PH are uninsured and 88% belong to racial/ethnic minorities (57% Hispanics, 31% Blacks). Of the 15 therapeutic breast cancer trials open at SCCC in 2021, 12 (80%) were open at PH. The PH breast cancer trial portfolio included 4 cooperative group, 5 industry-sponsored (ISTs), and 3 investigator-initiated studies (IITs). Four trials were in metastatic setting and 8 were in curative intent setting. Four trials required a genomic biomarker. Forty-three patients were enrolled in therapeutic trials at PH in 2021. This represents 10.3% (43/418) of new cases during the same time period. Thirty-two were enrolled in cooperative group studies, 10 in IITs, and 1 in ISTs. The majority (93%) of the trial participants belonged to under-represented minorities. Number of trial participants in 2021 increased by 48% compared to the best year in the past 5 years (29 patients enrolled in 2018). Conclusions: Collaboration between academic institutions and safety-net systems presents a unique opportunity to provide clinical trial options to under-represented minorities. In this setting, interventions to improve trial portfolio, provider awareness, screening process, and patient education, as well as addition of a patient research navigator resulted in a significant increase in the number of minority participants in breast cancer trials at our safety-net hospital.
Diversity, equity, and inclusion in cancer clinical trial enrollment: Laying the groundwork for a cancer center collaborative intervention through key informant interviews.
Authors: Goel Pakhi , Edmonds Megan C. , Lin Sylvia , Goodman Karyn A. , Smith Cardinale B. , Hillyer Grace C. , Bickell Nina A. 
Published: September 2022

98 Background: Clinical trial (CT) participation rates in the US are about 8% overall. Although, Black, Indigenous and People of Color (BIPOC) are as willing to join CTs as Whites, they remain underrepresented. We will implement a multi-level intervention across 3 cancer centers in New York City by creating a collaborative pool of CTs for breast, prostate, and liver cancer, thereby increasing availability of trials for all, especially BIPOC populations. To lay the groundwork, we conducted a formative evaluation to identify constructs that can influence implementation of this intervention. Methods: We designed a semi-structured interview guide for key informants to ascertain barriers and facilitators of enrollment at 1 cancer center and its 2 community affiliates. 23 key informants including oncologists, research staff, informatics, nurses, and cancer center leadership were identified using a targeted approach, followed by snowball sampling. Interviews were recorded, transcribed, and analyzed using thematic analysis approach. Results: Facilitators of accrual include patient referrals from physician-investigators and their teams, and oncologists’ knowledge of open trials through tumor boards, disease focus groups, and research meetings. Major barriers to CT enrollment are gaps in trial portfolio, inadequate infrastructure (e.g., staffing, space, and time), and incentives (e.g., RVU-based reimbursements). Informants felt that for patients, financial toxicity, medical mistrust, inadequate health literacy, comorbidities, poor performance status, and language are reasons for low accrual. Physicians emphasized their willingness to refer patients out-of-institution for CTs but lacked knowledge of outside trials. Care coordination across sites and loss of revenue for home institution are system-level barriers to referral. Additionally, informants believed that patients’ willingness to seek trials at other institutions is influenced by their commute, unfamiliarity with a new system, insurance coverage, rapport with oncologist, and motivation. Conclusions: Involving key stakeholders, increasing physician awareness of open CTs, educating patients and addressing their concerns about CTs, improving access to bilingual materials and interpreters, standardizing care coordination and ensuring similar rates of referrals across institutions are key facilitators to implement a multi-level intervention to increase CT enrollment across a cancer center collaboration.
Evaluating factors contributing to low rates of breast cancer clinical trial accrual in a diverse patient population.
Authors: Podany Emily L , Bulsara Shaun , Sanchez Katherine , Badr Hoda , Jibaja-Weiss Maria , Nemati Shafaee Maryam 
Published: September 2022

100 Background: In an ideal world, the populations studied in cancer clinical trials (CCT) would be representative of the patients seen in clinic. Unfortunately, significant disparities exist in trial enrollment. Patients who are white, male, insured, or of high socioeconomic status (SES) are overrepresented in NCI-sponsored CCT. Despite data indicating equal willingness for participation in CCT across all racial groups, lack of access, cultural barriers, and social determinants of health contribute to poor accrual rates among racial and ethnic minority patients. The Dan L. Duncan Comprehensive Cancer Center (DLDCCC) provides equal access to breast CCT at Smith Clinic (SC) within the safety-net Harris Health system and Baylor St. Luke’s Medical Center (BSLMC). The patient populations differ greatly at these two sites, with BSLMC serving > 95% insured, largely Caucasian patients, and SC serving 60% uninsured, mostly low SES patients, with > 80% racial and ethnic minorities. Despite equal access, patients at SC have a significantly higher CCT refusal rate. Methods: We performed a retrospective review of a prospectively maintained database of new patients seen at DLDCCC dating from 5/2015 to 9/2021, which included 3043 patients screened for breast CCT. 366 patients were found to be eligible for CCT. Some patients were eligible for multiple CCT, so there were 431 total offers of CCT. We performed logistic regression to evaluate whether differences in age, clinic, race, trial type, and primary language may be underlying the observed differences in CCT enrollment rates. Results: In the BSLMC cohort, 61% (116/204) of eligible patients enrolled in a CCT, while in the SC cohort only 39% (74/227) of eligible patients elected to enroll in CCT. This difference was significant on univariate but not multivariate analysis. There were significant differences when comparing race and trial type in the overall patient set. On univariate analysis, SC patients, African American (AA) patients, Hispanic/Latino patients, and Spanish speaking patients were significantly more likely to decline CCT participation. However, on multivariate analysis, only the AA patient category was associated with enrollment refusal (odds ratio 0.261, 95% CI 0.116-0.563, p < 0.001). On both univariate and multivariate analyses, patients were significantly more likely to accept biobanking trials (multivariate: odds ratio 12.799, 95% CI 3.777-61.403, p < 0.001). Conclusions: Based on these findings, it is likely an oversimplification to assume that equal access will lead to a complete elimination of CCT disparities. Our AA patients were significantly less likely to agree to participate in clinical trials, challenging the commonly held view that lack of access is a major barrier. We are exploring interventions designed to improve our AA patient population’s views of trial enrollment.
Saturday pap smear clinic: Addressing barriers to women’s health.
Authors: Strelow Brittany Ann , O'Laughlin Danielle , Fellows Nicole , Stevens Joy , Fink Stephanie , Stolp Anne , Peters Sonya , Tweedy Johanna , Anderson Jordan Ann , Francis Mollie , Abdi Deqa , Abuhadid Kholood , Gertner Gabrielle , Olson Rachel 
Published: September 2022

105 Background: Screening for cervical cancer with pap smears and HPV testing can improve patient outcomes by allowing for early identification of cervical cancer. The Minnesota Community Measure and Mayo Clinic's goal is to have a cervical cancer screening rate of 82% (Detailed Report-Cervical Cancer Screening, 2020). Healthy People 2030 aims to have a cervical cancer screening rate of 83.4% (Increase the proportion of females who get screened for cervical cancer -C-09, 2021). Community Internal Medicine cervical cancer screening rates are below this level at 63.09% compliance, with 5,239 patients non-compliant, who are eligible for cervical cancer screenings. Olmsted County only offers acute services on the weekends with no primary care services, which leaves women who work during the week or have childcare/caregiver issues with no options on the weekend or evenings when they have availability to attend appointments. Methods: Based on guidelines for pap smear screening (women ages 21-65), 14,195 women were identified within CIM to be eligible for screening. Of those, 5,239 were due for screening. The Saturday Pap Smear Clinic had 88 available spots. We aimed to improve cervical cancer screening rates among non-compliant women within Community Internal Medicine by 1% (52 women, total noncompliant women = 5,239) by January 2021 without adversely impacting coverage of existing clinic hours. Results: The electronic medical record (EMR), EPIC, was utilized to identify all patients who were eligible for a pap smear based on current guidelines (Total eligible = 14,195; Sample size/non-compliant: 5,239 patients) within Community Internal Medicine (CIM) of the Baldwin Building in Rochester, MN. Interventions included: surveys that were sent to patients via the Patient Portal. Advertising for the Saturday Clinic included Primary Care News, E-boards, Posters, Social Media, SCOPE, Mayo News, and Providers. The Saturday clinic allowed time outside the traditional hours. One unique feature of the clinic is that all females staffed it during clinic hours in an attempt to alleviate some of the fear/anxiety. After completion of the pilot Saturday Pap Clinic, pap smear compliance from the Saturday Pap Clinic alone arose 1.2% (62 patients) within CIM. Conclusions: Post-intervention, cervical screening rates among non-compliant women within Baldwin CIM improved by 1.2% (62 women total).
What’s missing? Diagnostic workup for breast cancer in Sudan.
Authors: Eltoum Noon , Caston Nicole E. , Gutnik Lily , Alfardous Alazm Mahmoud A. , Mohamed Feras Omer , Abdalkarem Lama Mahjoub , Saad Saad Ahmed , Badawi Abrar Z. , Henderson Nicole , Azuero Andres , Rocque Gabrielle Betty 
Published: September 2022

110 Background: In Sudan, healthcare access may limit diagnostic workup for breast cancer. This study evaluates the relationship between geography and ethnicity and completeness of documentation of diagnostic workup (staging and receptor testing) in Sudan. Methods: This retrospective study used data abstracted from patients with breast cancer receiving cancer care at Sudan’s largest cancer center (Radiation and Isotopes Center Khartoum [RICK]) in 2017. The patient’s age at diagnosis, sex, breast cancer stage, ethnic subgroup (further categorized as Arab and non-Arab), regions of origin and residence (Central, Northeastern, Western, and Khartoum [where RICK is located]), and receptor status from pathology reports were abstracted from paper medical records. Complete diagnostic workup was defined as having both receptor testing and staging. Descriptive statistics were calculated using frequencies and percentages for categorical variables and median and interquartile range (IQR) for continuous variables. Odds ratios (OR) and 95% confidence intervals (CI) were estimated to evaluate complete diagnostic workup on ethnic group, origin, and residence using binomial logistic regression models (excluding non-Sudanese patients and those with missing demographics). Results: Of 240 patients included, 237 were female, median age was 53 (IQR 43-62). Most often patients were Arab (68%), originated from Northeastern and Khartoum regions (both 28%) and lived in the Khartoum region (53%). Overall, 49% patients were missing receptor testing and/or staging, with modest differences by geographic region and ethnicity (Table). In adjusted analyses, non-Arab patients had similar odds of having complete diagnostic workup when compared to Arab patients (OR 1.22; 95% CI 0.70-2.10). Patients originating from and residing in regions outside the Khartoum region had similar odds of complete diagnostic workup when compared to patients originating from and residing in the Khartoum region. Conclusions: Almost half of breast cancer patients had incomplete diagnostic workup, regardless of region of origin, region of residence, and ethnic group. This highlights a substantial systems-based quality gap in care delivery, warranting efforts to improve completeness in diagnostic workup for all patients with breast cancer in Sudan.[Table: see text]