bluuebunny/crossref_metadata_2025 huggingface dataset:
Faith-based communities’ preferred interventions to improve the participation of black/African-American persons in medical research and clinical trials: A focus group study.
Authors: Hurwitz Heather McKee , Combs Pamela , Ribbins Mark , Nguyen Minh-Tri , Sanders Kimberly
Published: June 2023

e18648

Background: A variety of interventions within faith-based and medically underserved communities have been utilized to increase racial/ethnic minorities’ participation in health programming and clinical trials. However, the literature lacks studies on which interventions are preferred by church members and leaders to address disparities in clinical trials. Methods: The study utilized focus groups to understand participants’ knowledge and attitudes about medical research/clinical trials and to develop and appraise interventions for and in collaboration with members and leaders of predominately Black/African American faith-based organizations. Participants were recruited by convenience and snowball sampling from organizations involved in the Cleveland Clinic Taussig Cancer Center Community Outreach program’s faith based model called, Stopping Cancer In Its Tracks (SCIIT). Study personnel conducted 6 focus groups at 6 different churches from June through August 2022. Results: 30 participants joined the study. Conversations lasted 90-120 minutes and covered a range of topics. Each group included deep, cathartic sharing about disparities in accessing medical/cancer care and racism, particularly within medicine. Participants explained that low enrollment among Black/African-Americans in clinical trials is a result of everyday and structural racism. Also disparities are linked to the compounded, long-term lack of beneficence or human rights within research and health care for their communities. Accordingly, diversity in clinical trials may improve by creating interventions that address distrust, communication, and information and access gaps, and are tailored to each church. Preferred interventions should: 1) Embody a deep, long-term, relationship-building process. 2) Focus on creating trust by sharing in church services/activities/meals/two-way conversations/cancer screenings. 3) Leverage testimonials from cancer survivors who have participated in clinical trials. The focus groups themselves were felt by participants to be an example of the trust building and knowledge sharing necessary to address disparities. Participants expressed interest to develop interventions in partnership with the study personnel of health care workers. Conclusions: The study fills a gap in the literature by analyzing and amplifying the ideas of Black/African-American church members and leaders from medically underserved communities who generally have been excluded from research. Participants preferred interventions that feature long-term relationship building and engagement. Future research should implement and test the effectiveness of these interventions.
Differences in racial and sex at birth representativeness between randomized controlled trial (RCT) and real-world evidence (RWE) or Surveillance, Epidemiology, and End Results (SEER) datasets in advanced non-small cell lung cancer (aNSCLC).
Authors: Savill Kristin M. Zimmerman , Gentile Danielle , Asgarisabet Parisa , Brown Madison , Chopra Dhruv , John William S , Swain Richard Scott , Klink Andrew J. , Feinberg Bruce A.
Published: June 2023

e18654

Background: Historically, racial and ethnic minorities, women, and older patients have been underrepresented in RCTs. Hence, therapeutics are approved based on data not representative of the broader population, leaving important gaps in knowledge of safety and effectiveness. RWE may help address these gaps and inform regulatory, clinical, payer, and manufacturer decision-making. Racial, sex at birth, and age distributions were compared between RWE studies and a corresponding RCT in the aNSCLC setting. Additionally, RCT data were compared to SEER aNSCLC data. Methods: Demographics of adults with aNSCLC in the KEYNOTE-407 RCT were compared with those of adults in two physician-abstracted medical chart review US RWE studies conducted in 2019 or 2020 or with the most recently available US SEER data (2017-2019). Statistical comparisons were performed using t-tests or chi square tests. Results: We identified 10,089 patients (RCT: n = 559, 5.5%; RWE: n = 783, 7.8%; SEER: n = 8,747, 86.7%) (Table). Significant differences in racial distribution were observed between the RCT and RWE study populations, with Black/African American patients comprising 1.3% of RCT patients and 24.0% of the RWE study population. Non-Hispanic Black patients made up 12.8% of SEER patients. The proportion of female patients was lower in the RCT (18.6%) compared with RWE (40.5%) and SEER (36.7%) data. Age at 1L initiation was significantly lower for RCT patients vs. age at metastatic diagnosis in SEER (mean: 64.7 vs. 70.0 years). However, no statistically significant difference in age at 1L initiation was observed between RCT and RWE data (64.9 vs. 64.7 years). Conclusions: In aNSCLC, significant differences in sex at birth and race were observed between RCT and RWE study populations. Additionally, significant differences in sex at birth and age were observed between RCT and SEER data. Given that regulatory, therapeutic development, clinical, payer, and decision-making is largely driven by data from RCTs, future research can leverage RWE to improve representativeness and generalizability. [Table: see text]
Evaluating disparities in pancreatic cancer outcomes in African Americans.
Authors: Shrotriya Shiva , Ghimire Bipin , Karki Ujjwal , Rangarajan Tara , Wang Can , Al-Banaa Kadhim , Ahaneku Hycienth , Poudel Shyam K , Hanona Paul , Ezekwudo Daniel , Jaiyesimi Ishmael A. , Zakalik Dana
Published: June 2023

e18657

Background: Pancreatic Adenocarcinoma (PA) is a leading cause of cancer-related death across the world, with poorer outcomes observed in minority populations. The observed variation in outcomes has been attributed to delayed diagnosis, barriers to optimal treatment and health care related disparities. We sought to evaluate the impact of race on clinical presentation and outcomes in pancreatic cancer at a large academic teaching center. Methods: We performed a retrospective review of patients with pancreatic adenocarcinoma diagnosed between January 2016 to December 2021. The demographic characteristics (age, tobacco use, alcohol use, BMI); comorbidities (diabetes, acute/chronic pancreatitis); pathology, treatment (chemotherapy regimen, radiation, surgery) and progression free survival (PFS) based on race were analyzed. Results: The cohort (N = 983) consisted of 154 (16%) African Americans (AA) and 803 (82%) Non-Hispanic Whites (NHW). The median age at diagnosis was 65 years (60, 70) among AA and 71 years (64, 78) in NHW. Thirty-seven (26%) of AA and 104 (14%) of NHW were current smokers; 46 (33%) of AA and 323 (45%) of NHW consumed alcohol regularly. Among AA, 32 (22%) were obese (BMI > 30), compared to 194 (25%) in NHW. Other comorbidities included diabetes (35% in AA vs. 32% in NHW) and acute/chronic pancreatitis (11% among AA vs. 9% among NHW). The treatment modality consisted of chemotherapy (57% in AA vs. 61% in NHW), surgery (26% in AA vs. 27% in NHW) and radiation (10% in AA vs. 12% in NHW). The median time to treatment initiation was 24 (16, 41) months for AA and 34 (20, 56) months for NHW. On univariate analysis, AA race was associated with younger age at diagnosis (p 0.043), higher current tobacco use (p 0.001), lower alcohol use (p 0.012), lower rates of obesity (p 0.024) and higher rate of acute pancreatitis (p 0.037) in pancreatic cancer. On multivariate analysis, race was not associated with difference in progression free survival (12 months in AA vs. 14 months in NHW; p 0.96) when adjusted for age, sex, alcohol use, tobacco use, cancer stage and chemotherapy. Conclusions: Our study revealed that pancreatic cancer in AA was diagnosed at a younger age, associated with active smoking and pancreatitis. Although there was a shorter time to treatment initiation among AA, there was no significant difference in progression free survival compared to NHW when adjusted for other variables. Future studies incorporating novel biomarkers are needed to determine impact of racial health disparities on outcomes in pancreatic cancer.
Social determinants of health as a primary driver in outcomes in acute myeloid leukemia: An urban academic center experience.
Authors: Bouligny Ian Michael , Murray Graeme , Patel Tilak , Doyel Michael , Boron Josh , Tran Valerie , Gor Juhi , Hang Yiwei , Ho Thuy , Zacholski Kyle , Venn Chad Michael , Alnimer Yanal Mufeed , Wages Nolan , Grant Steven , Maher Keri Renee ,   LCRT
Published: June 2023

e18659

Background: Healthcare disparities are pervasive in the treatment of cancer. Black patients with acute myeloid leukemia (AML) have shorter survival and inferior outcomes compared to White patients. Lack of insurance coverage decreases survival further. However, outcomes with respect to individual chemotherapy regimens remain unclear. Methods: We analyzed 306 patients with untreated AML that received front-line induction with an anthracycline and cytarabine (7+3) at VCU Massey Cancer Center between January 1, 2013 and January 1, 2022 in this single-center, retrospective analysis. We stratified patients into two cohorts: those that had private insurance or Medicare and those that had no insurance or Medicaid. We recorded baseline demographics, performance status, disease characteristics, response, receipt of allogeneic stem cell transplant (alloSCT), and survival. Patients who were alive at the end of the study period or were lost to follow-up were censored at the date of last contact. Results: There were 243 patients with private insurance or Medicare (Pi/M) and 63 patients with no insurance or Medicaid (Ni/M). The median age was 60 years (range, 18-77) in the Pi/M cohort and 52 years (range, 22-71) in the Ni/M cohort ( p < 0.001). Most patients with private insurance or Medicare tended to be White (72.7% for Pi/M versus 36.1% for Ni/M, p < 0.0001). There were no differences in sex (p = 0.778), the median ECOG score (1 versus 1, p = 0.096), or the median CCI score (4 versus 3, p = 0.607). There were no differences in the distribution of ELN 2017 risk, secondary AML ( p = 0.619), or procession to alloSCT ( p = 0.145). There was no difference in the composite complete remission (CRc; CR + CRi) rate between the Pi/M [44.5% (95% CI, 38.5-51.0)] and Ni/M cohorts (52.6% [95% CI, 39.9-65.0], p = 0.301). The median overall survival significantly favored the patients with private insurance or Medicare (21.7 months versus 15.2 months; log-rank, p = 0.030). Conclusions: AML patients with Medicaid or without insurance tend to be younger minorities. Despite no difference in fitness, disease characteristics, or even response to first-line chemotherapy, the median overall survival significantly favors patients with private insurance or Medicare. Our data clearly illustrates the primary role of social determinants of health in overall outcomes. Policymakers and physicians should push for improved access to care and more affordable insurance coverage. [Table: see text]
Examination of current status of cross-provincial border access for clinical trials for patients with cancer.
Authors: Rim Claire , Zaib Farwa , Touma Kayla , Hossami Mahmoud , Abdel-Nabi Rhonda , Cavallo-Medved Dora , Hilal Olla , Driedger Zoe , Moudgil Devinder , Paunic Milica , Nassar Renee , Hirmiz Roaa , McGrath Lee , Hamm Caroline M.
Published: June 2023

e18661

Background: Clinical trials are the gold standard for establishing new and reliable treatment options. Even though 80% of cancer patients state that they would be interested in entering a clinical trial, only 3% of adults with cancer participate in clinical trials due to several challenges. Through a Clinical Trials Navigator program, we have curated clinical trials for approximately 243 patients and 7% have entered onto clinical trials. However, none of the patients were referred to trials outside of their home province due to a lack of clarity on the cross-border referral process. The goal of this study is to analyze the availability of patients for participating in out-of-province clinical trials in the presence of a lack of policy for provincial border referrals. Methods: This study was conducted by doing clinical trial searches for cancer patients using several clinical trial search engines such as ClinicalTrials.Gov, CanadianCancerTrials.com, ClinicalTrialsOntario, 3CTN, and Q-CROC. We also used a search engine to compare the number of clinical studies available in various cities for the four most common types of cancer in Canada. After this, an analysis was performed on over 243 clinical trial searches. Results: Out of the 18 patients we observed, most of them had potential out-of-province trials, but none of them joined out-of-province trials because of the lack of information regarding the process. Also, province disparity in trial availability was found for the most common cancers in Canada. The numbers of trials available in Ontario and Quebec are much higher than the number of trials available in PEI and Newfoundland which is almost zero or zero. The home treatment center of most of the patients involved in this study was Windsor Regional Hospital, and all of them were from Ontario. Among the patients that were referred, most of them were referred to Princess Margaret Cancer Centre in Toronto. Again, none of the patients were referred to cancer centers out of Ontario. Conclusions: In conclusion, our findings reveal the province disparity in the number of clinical trials available. The lack of policies that inform Canadians on how to cross provincial boundaries to enter a clinical trial prevents them from receiving the most needed cutting-edge treatments, compromising potential patient outcomes. Therefore, we need more clarity on policies for the cross-border referral process.
Risk of financial stressors in patients diagnosed with cancer: Lessons from a nationwide financial navigation program.
Authors: Incudine Andrea , Winder Katharine , Draper Fitzgerald , Stivers Thomas , Ferris Andrea Stern , Basu Roy Upal Kunal
Published: June 2023

e18662

Background: Financial toxicity associated with a cancer diagnosis exacerbates the financial crisis in cancer patients and their families. Financial crisis is associated with poor outcomes due to both non-medical and medical hardships. Family Reach, a US-based nonprofit, is dedicated to removing financial barriers standing between cancer patients and their treatment through comprehensive financial navigation. In this study, we sought to understand the prevalence of medical and non-medical financial stressors in a Family Reach cohort. Methods: Patient application data (provided by patients, caregivers, or case workers) from the Family Reach program received between March 2020 and June 2022 were included in the analysis. Data included patient demographics, clinical attributes, financial attributes, and medical and non-medical financial stressors (described below). Significant associations between stressors and patient characteristics [X2 test and Odds Ratios (OR)] are presented. Results: A total of 10,558 applications representing 50 states and D.C. were processed in the study period. Data was stratified by type of cancer (55% solid vs. 38% hematologic), age of patient (32% pediatric, 32% AYA, & 36% adult), and patient race & ethnicity [41% non-Hispanic White (W), 22% non-Hispanic Black (B), 16% Hispanic/Latinx (H/L)]. Ninety-two percent had annual household income < $70,000 (US median -$70,784 in 2021). Race and ethnicity differences: Eighty-five percent B and 84% H/L patients had an annual household income < $50,000, as compared to 65% W patients (X2p < 0.05), and more likely to belong to single-parent households (59% B, 40% H/L, 30% W, X2 p < 0.05). B and H/L patients were at a higher risk of food insecurity (B vs. W, OR = 1.8, H/L vs. W, OR = 1.9), utility shut-off (B vs. W, OR = 1.9, H/L vs. W, OR = 1.4), phone shut-off (B vs. W, OR = 2.0, H/L vs. W, OR = 1.2) and houselessness (B vs. W, OR = 1.8, H/L vs. W, OR = 1.7), compared to W patients, after adjusting for geography. Age of cancer onset: No income differences were observed between pediatric, AYA, & adult patients. Adult (OR = 3.2) & AYA (OR = 1.9) patients had a higher risk of unpaid medical expenses, as compared to pediatric patients, after adjusting for income & geography. While no significant differences were noted between solid and heme cancers, lung patients were at a higher risk of financial distress from non-medical expenses (e.g., risk of homelessness OR = 1.4) as compared to breast, colon, and prostate combined, after adjusting for income & geography. Conclusions: To our knowledge, this is the first analysis of financial stressors in a US national cohort of cancer patients and receiving financial navigation. The higher prevalence of financial stressors in patients of color in this self-selected group indicates that interventions addressing cancer need to integrate social determinants of health.
Comparison of diversity across real-world evidence, randomized clinical trial, and Surveillance, Epidemiology, and End Results (SEER) data in patients with metastatic breast cancer.
Authors: Gentile Danielle , Balanean Alexandrina , Asgarisabet Parisa , Brown Madison , Swain Richard Scott , Klink Andrew J. , Feinberg Bruce A.
Published: June 2023

e18670

Background: Compared with patients in typical care settings, participants in randomized clinical trials (RCTs) tend to be younger and less diverse. We compared representation of age, race, and ethnicity at initiation of first-line (1L) therapy for metastatic breast cancer across real-world evidence (RWE), RCT, and Surveillance, Epidemiology, and End Results (SEER) registry data. Methods: RWE and SEER inclusion criteria were based on corresponding RCTs. We compared age, race, and ethnicity at initiation of 1L therapy among female patients with metastatic breast cancer across 2 RWE chart review studies (completed between 2019-2021), 4 RCTs with similar eligibility (reported between 2014–2021), and the latest SEER registry data (2017–2019) using t-tests and 2-sided chi-square tests. Results: We collected demographics of 57,479 patients (RWE: n = 860, 1.5%; RCT: n = 2,707, 4.7%; SEER: n = 53,912, 93.8%). Mean age at 1L therapy initiation was significantly higher in RWE than RCT studies (61.8 vs 56.0 years) and representation of Black patients was significantly higher in RWE than RCT studies (25.3% vs 2.9%), both P< .001. Mean age at metastatic diagnosis in SEER was 59.0 years; age at 1L initiation was not reported. SEER included 13.4% Non-Hispanic Black patients. Hispanic representation was 11.2% in RWE, not reported in RCT, and 15.9% in SEER studies (Table). Conclusions: Decisions about treatment choices among clinicians and payers are primarily driven by RCT results, yet they may not be representative of real-world populations. We found that RCTs had lower representation of older and Black patients than both SEER and RWE studies. Limitations included varying study periods, lack of Hispanic ethnicity reporting in RCTs, differential SEER participation by US region, and potential patient overlap. Well-conducted RWE studies may fill gaps left by RCTs for improving representation and generalizability to patients with metastatic breast cancer. [Table: see text]
Representation of age, race and ethnicity in real-world evidence (RWE), randomized clinical trial (RCT), and Surveillance, Epidemiology, and End Results (SEER) cancer patient registry data in advanced renal cell carcinoma (aRCC).
Authors: Garretson Marné , Gentile Danielle , Brown Madison , Asgarisabet Parisa , Swain Richard Scott , Klink Andrew J. , Feinberg Bruce A.
Published: June 2023

e18672

Background: Representation of key demographic characteristics in real-world settings and clinical trial environments is medically necessary to address evidentiary gaps and disparities in clinical outcomes among patients with advanced renal cell carcinoma (aRCC). We characterized age, race, and ethnicity in patients with aRCC in real-world evidence (RWE), corresponding randomized controlled trials (RCTs), and Surveillance, Epidemiology, and End Results (SEER) data during contemporaneous periods spanning 2017-2022. Methods: Demographic characteristics were assessed from one RWE chart review study, two RCTs (Checkmate 214 and Keynote 426), and a SEER cohort based on RCT/RWE eligibility criteria and compared across data sources using 2-sided chi-square or t-tests. Results: Age, race and ethnicity were collected for 4,821 patients (RWE: n = 635, 13.2%; RCT: Checkmate 214 n = 1,096 and Keynote 426 n = 861, 40.6% across both RCTs; SEER: n = 2,229, 46.2%). RCT participants were younger at metastatic diagnosis (60.9 vs 65.1 years) and at 1L therapy initiation (60.9 vs 65.7 years) compared to patients in RWE and SEER, respectively (both p < 0.0001). Black patients accounted for 17.2% in RWE, 1.6% in RCT, and 4.8% in SEER data, and Asian patients accounted for 6.3% in RWE, 11.8% in RCT, and 6.0% in SEER data. Hispanic representation was significantly higher in RWE studies than RCT studies, (15.0% vs 3.4%), P< .001. A significantly greater proportion of white patients was observed in RCTs than RWE (84.5% vs 71.7%) and greater representation of non-Hispanic white patients was observed in SEER vs RWE (67.5% vs 60.3%), P< .001 (Table 1). Conclusions: This study describes existing disparities in representation of age, race, and ethnicity among patients with aRCC in research. RCTs had lower representation of older, Black, and Hispanic patients with aRCC compared to SEER and RWE studies. Despite limitations including sparse data available among Hispanics in RCTs, RWE studies can provide greater visibility to traditionally medically underrepresented patients with aRCC. [Table: see text]
Black voices on gynecologic cancer: Understanding experiences.
Authors: Richardson Kimberly , Balogun Onyinye
Published: June 2023

e18680

Background: Structural racism and bias affects care of Black gynecologic cancer patients. Factors associated with disparities in Black cancer death rates have been associated with structural racism which has systematically limited the standard of living (wealth, housing, education, healthy food and healthcare) for Black people. Recent studies point to implicit bias, and lack of cultural sensitivity playing a significant role in the health outcomes of Black cancer patients. For instance, despite NCCN guidelines, oncologists underprescribe chemotherapy for older Black women with ovarian cancer and underdose chemotherapy for Black women with cervical cancer. Moreover, Black women dying from advanced uterine cancer are given pain medication at lower rates & there are disparities in palliative care utilization amongst Black patients with metastatic gynecologic cancer. The voices of Black patient advocates are frequently missing from research studies. By centering the voices of Black patient advocates, we can identify new means of addressing & positively impacting disparities within the clinical care spectrum (from diagnosis to survivorship). Our study group, Black Voices on Gynecologic Cancer: Understanding Experiences, aimed to identify common and unique scenarios of racism and bias in the experiences of Black patients with gynecologic cancer seeking medical attention. Methods: Focus groups were advertised using social media and partner patient advocacy organizations. We conducted five focus groups of 24 Black gynecologic cancer survivors using a Zoom platform. Key themes were identified through individual and group review of transcripts. Results: The themes that emerged from the focus groups included: (1) lack of communication and/or clarity in patient/provider communication - “… my first appointment with my gyn I did…share that…I'm having these hot flashes, night sweats…so he gave me some medicine, but… they´d never really addressed and had a conversation about like this is what your body will be experiencing…So, I really have been dependent on other women that have gone through this.”, (2) insufficient mental health support throughout and after treatment, (3) experiences with misdiagnosis (4) provider’s inadequate management of patient pain, (5) failure to mention clinical trials and (6) difficulty navigating insurance. Conclusions: Our study identified gaps in the care of Black gynecologic cancer patients. The second phase of BVOGUE will reduce structural barriers that prohibit authentic patient and community engagement around gynecologic cancer care and participation in academic research for Black cancer patients. We will pilot modules for both cancer education and research advocacy. This model will serve as a roadmap for all cancer centers creating action plans for engagement, inclusion, and participation.
The Onc Docs: Partnering with Black cancer patients for cancer education.
Authors: Balogun Fiyinfolu , Balogun Onyinye
Published: June 2023

e18681

Background: In 2022, there will be approximately 224,080 new cancer cases and 73,680 cancer deaths among Black individuals in the United States. Black people are disproportionately burdened by cancer due to higher incidence and mortality levels across multiple cancer types. Yet, their stories are underrepresented in media and the top podcasts for cancer education do not feature Black experts. We formed our podcast, The Onc Docs, to highlight the (under-told) stories of Black individuals with cancer and to provide education about cancer from Black patient survivors, patient advocates and oncologists.We sought to understand the current landscape of podcasts focused on the Black cancer experience & to assess public engagement with The Onc Docs across social media platforms. Methods: We conducted a search of "Black cancer" in Google, Spotify and Apple podcasts. Search engines were also utilized to identify podcasts with a focus on the Black cancer experience. Finally, we reviewed our publicly available listener and follower statistics. Results: At least 12 podcasts on the Black cancer experience were identified with the majority available on Google Podcasts. Seven of the twelve podcasts focused on breast cancer in Black women while two podcasts discussed prostate cancer and one featured brain tumors. Two podcasts (17%) published episodes for one or more years. The remaining podcasts (n = 10) were in existence for an average of 3 months. Three podcasts had published an episode in 2022. Since starting our podcast in September 2020, we have 958 Twitter followers and 400 followers on Instagram. According to Spotify, from 2021-2022, our podcast was heard in 4 countries, increased 87% in streams, 40% in listeners and 235% in hours spent listening to our episodes. On Google Podcasts, we have 4 subscribers. Each month, about 100 unique visitors navigate to our website. Conclusions: Podcasts on the Black cancer experience are needed especially those with a focus apart from breast cancer. Prior podcasts may lack longevity due to a lack of financial and infrastructural support needed to sustain a podcast. In the past year, our work has garnered attention from the general public and gained traction with patient advocacy and scientific associations like Black in Cancer, Cancer Research UK, and Touch Breast Cancer. However, additional efforts & support are needed to ensure consistent creation and delivery of episodes. For instance, we can utilize Facebook, the largest social media platform, to expand our reach. With future growth, we will be able to access data analytic tools to determine the demographic breakdown of our audience and if we are reaching Black listeners.
The impact of hispanic ethnicity in presentation and outcomes of patients with synovial sarcoma.
Authors: Barreto Coelho Priscila , Hana Caroline , Yanchenko Natalia , Bialick Steven , Rosenberg Andrew , Dhir Aditi , Jonczak Emily , D'Amato Gina Z. , Hussein Atif Mahmoud , Trent Jonathan C.
Published: June 2023

e18682

Background: Synovial sarcomas (SS) harbor a specific, balanced, reciprocal translocation t(X;18) leading to the oncogenic SS18-SSX fusion. It accounts for 5-10% of all soft tissue sarcomas, and there is a lack of information regarding the impact of race and ethnicity on its presentation and outcomes. Florida is currently not included in the SEER database, and it is the US's ninth-most diverse population, with a diversity index of 64.1% and with the sixth-highest Hispanic population among all states. Sylvester Comprehensive Cancer Center (SCCC) and Memorial Healthcare System (MHS) are two large oncology centers in South Florida that provide care for this rare type of tumor. We aimed to identify the impact of Hispanic ethnicity in SS. Methods: We retrospectively reviewed all patients with a confirmed diagnosis of SS between January 2003 and January 2022 in SCCC and MHS. All data were retrieved from electronic medical records. SPSS Statistics was utilized, Fisher exact test and log-rank test were used for analysis. A two-sided p < 0.05 was considered statistically significant. Results: A total of 73 patients had a pathologically confirmed diagnosis of SS, with information regarding ethnicity, during the time period evaluated, 45.3% were Hispanic, and 54.7% were non-Hispanic. The Hispanic group was comprised mainly of female patients (66%) with a median age of diagnosis of 44 years old, these findings were similar in the non-Hispanic group, where 55% were women, and the median age at diagnosis was 42 years old. Fewer patients identified themselves as Black within the Hispanic group (3%) compared to the non-Hispanic (22%) (p = 0.016). The most common site of primary disease was the extremity in both groups (Hispanic 63% vs non-Hispanic 75%) (p = 0.384). Most tumors were diagnosed with a size bigger than 5cm (Hispanic 57% vs non-Hispanic 65%) (p = 0.577) and with pathology reporting a monophasic SS (Hispanic 45% vs non-Hispanic 50%) vs biphasic or poorly differentiated (p = 0.061). Non-Hispanics had more poorly differentiated tumors (Hispanic 3% vs non-Hispanic 17.5%) (p = 0.054). Hispanic patients did have fewer cases of metastatic disease at diagnosis (Hispanic 9% vs non-Hispanic 32%) (p = 0.023). The median overall survival (mOS) among Hispanic patients was not reached in our study, and mOS among the non-Hispanic patients was 5 years (p = 0.099). Conclusions: In our study, the patients more commonly presented with large tumors ( > 5cm) in the extremity and monophasic histology, regardless of their ethnicity. Non-Hispanic patients more often had poorly differentiated tumors, metastatic disease at diagnosis, and a trend toward worse mOS. This study had limited power due to the limited number of patients, and further studies are needed to identify the presence of disease-related differences in these populations.
National Coalition for Cancer Survivorship State of Survivorship Survey.
Authors: Fuld Nasso Shelley , Lopez Ana Maria , Panagiotou Veronika
Published: June 2023

e18684

Background: The National Coalition for Cancer Survivorship (NCCS) conducts an annual State of Survivorship Survey to delve into the cancer survivor journey. The survey is needed to identify health disparities, gaps in quality care and assessment of the health care landscape that needs policy change at the national level. The survey objective is to better understand the differences in cancer survivor attitudes, experiences, and needs at every stage of the cancer journey. The survey identifies who the under-served audiences in the cancer community are, what are their specific challenges, and how the system can better meet their needs. Methods: Phase one was 15 virtual interviews of young adults; Hispanic adults; men. Phase two was a nationwide survey of 2,078 patients and survivors. Surveys were recruited through an online non-probability sample with quotas set to ensure demographically representative audiences. Phase three was a survey invitation to all NCCS email contacts, patient advocacy organizations, followers on social media to take the survey. The NCCS connected group was 670 patients and survivors. Results: We segmented the patients into experiential categories: those who have had positive experiences during their journey, mixed, and negative. Nearly three-quarters of respondents reported they were very satisfied with their treatment and care, due to a high degree of trust in and the relationship with their health care team. However, large disparities exist for those in the Negative Experience group. 68% of respondents overall said they always felt their health care provider listened to and respected their concerns, while only 47% of Hispanic respondents and 47% of individuals with metastatic cancer agreed. Similarly, 68% overall said they could always talk to their health care provider about their concerns, while 46% of Hispanic respondents and 50% of individuals with metastatic cancer agreed. Further, levels of trust were high, but groups with lower levels of trust included young adults, Blacks, Hispanics, people living with metastatic cancer. The Negative Experience group gave providers lower satisfaction scores and used terms like “bullied,” “ignored,” “test subject,” and “rushed” to describe their care. While majorities of patients said their health care team was a critical support network during treatment, followed by family/friends and faith, the Negative Experience and Mixed Experience audiences were significantly less likely to report support in any areas of their life during treatment. Conclusions: The survey is sharing the lived experience of cancer care today and brings to light the health disparities. The results show that part of this disconnect is demographic — people of color, younger, and lower socioeconomic status patients are more likely to be in the Mixed and Negative Experience segments. And part of it is experiential — these patients struggle through the their treatment and care.
Rural healthcare: A retrospective review of lung carcinoma demographics and screening in the northern Arizona healthcare system.
Authors: Schmoyer Jeremy , Sekeyan Tro , Pradeep Roshini , Rocca Neychelle
Published: June 2023

e18696

Background: In the United States, lung carcinoma is the leading cause of cancer mortality. In 2022, the National Cancer Institute estimated 236,740 new cases of lung cancer, or 12.3% of all new cancer cases, and 130,180 deaths, or 21.4% of all cancer deaths. The risk factors for lung cancer include cigarette smoking, secondhand smoke, the non-Hispanic population, air pollution, or prior radiation therapy. The fatality and common risk factors emphasize the importance of the screening guidelines. Northern Arizona is considered an area affected by downwinder syndrome which is defined as individuals exposed to radiation from the explosion of nuclear devices at the Federal Nevada Test Site with radioactive materials being disturbed by winds. Northern Arizona Healthcare (NAH) has a large population located in these affected counties and lung cancer demographics were reviewed to observe for any variation when compared to the general population. The patients were also reviewed to determine if there were any major deficits in screening guidelines. Methods: This retrospective review included patients diagnosed with lung carcinoma based on the ICD 9 and 10 codes between 2015 to 2020 in the NAH systems. The total number of charts included 559 but 184 were excluded for the following reasons: concern for lung cancer, but not confirmed, patients located not in Northern Arizona, diagnosed prior to 2015, duplicate name but same medical record number, malignancy other than lung cancer, metastatic cancer with unknown primary, and lung cancer was eventually ruled out. The total number of patients remaining in the review was 375. Demographics and lung carcinoma screening information were obtained through NAH medical records. Results: Demographics: median age of 71 with 286 of 375 patients > 65; gender 53.06% males, 46.4% female; race: 88.8% Caucasian, 4.8% Hispanic, Native American 4%, African American 2.1%, Asian 0.3%; smoking history 56.8% active, 31.4% former, 10.6% never; Lung Cancer Pathology: Adenocarcinoma 49.3%, Squamous Cell 18.9%, NSCLC (other than adenocarcinoma or squamous cell) 11.78%, Small Cell 17%, undetermined 2.7%; Lung Cancer Screening: 64.50% no screening vs 7.2% who did, 28.3% were indeterminable. Conclusions: Despite Northern Arizona being considered an area affected by downwinder syndrome, a five-year review of lung carcinoma demographics did not expose any major variation when compared to the generalized population. A limitation was molecular markers were not included and a potential area of further investigation. The review did expose deficits in lung carcinoma screening. 64% of the 375 patients were not screened for lung cancer. A formal presentation was held at NAH grand rounds to raise awareness of lung carcinoma screening guidelines. For future advancement, a collaboration with IT to develop outpatient screening alerts to optimize healthcare in rural areas.
False positive PET scan in patients with treated malignancy following COVID-19 vaccination.
Authors: Slota Alexander Antoni , Parmar Vrajesh , Weise Amy M. , Wang Ding
Published: June 2023

e18698

Background: The COVID-19 pandemic led to mass vaccination across the globe and resulted in several unintended consequences, one of which being reactive lymphadenopathy mimicking malignancy. A large study reported hypermetabolic lymphadenopathy (HLN) in over 45% of patients after receiving at least one dose of COVID-19 vaccine. A study on breast cancer patients noted a near-400% increase in lymphadenopathy on MRI and ultrasonography over the two years prior to mass vaccination. These findings present a dilemma in patients with treated malignancy while under surveillance. As vaccination became more commonplace, a case series reported on patients with PET-detected lymphadenopathy, with biopsies confirming VRLN. These investigations contributed to general recommendations on the importance of clinical context in patient care after COVID-19 vaccination. We present a unique study that evaluates patients with treated solid and hematological malignancies that presented with HLN after COVID-19 vaccination which emphasizes the importance of clinical acumen in the management of oncological patients in the pandemic era. Methods: We identified 6 patients aged 39-95 with prior malignancy. 5 were diagnosed with metastatic melanoma, and one had a diagnosis of high-grade B-cell lymphoma. Patients were managed with chemotherapy, immunotherapy, surgery, radiotherapy, or a combination of modalities, and were in complete radiological remission. All patients received at least two doses of a COVID-19 vaccine, with one dose at least three weeks prior to a routine surveillance PET-CT. Each patient exhibited HLN. Results: Of six patients, three underwent biopsy. There was no evidence of malignancy in any biopsy, and VRLN was confirmed. The remaining patients were followed with surveillance, and all had resolution of HLN without intervention. Time between COVID-19 vaccination and PET evidence of HLN ranged from 19 to 232 days. Time between first positive and first resolved PET ranged from 92 to 463 days. All patients were alive at the time of abstract submission. Conclusions: Our study emphasizes the importance of a focused history when suspecting recurrent malignancy, especially after sustained remission in our vulnerable populations. Acknowledging that COVID-19 vaccination can lead to HLN is becoming more common, and we show that this can occur, persist, and resolve even months after vaccination. While high suspicion for recurrence should be maintained, all efforts should be taken to protect patients and prevent unnecessary procedures. Records of recent vaccinations should be available and reviewed prior to radiological studies and clinical decisions, which can reduce avoidable interventions and harm. Surveillance of our patients proved to be an appropriate approach, and our study shows that similar patient presentations can have different paths of care depending on the awareness of treating physicians.
Implementation of a secure mobile application to improve care of patients with breast cancer: Experience from a medically underserved area.
Authors: Adhikari Biplov , Marasini Anurag , Mohebtash Mahsa , Farha Maen Jamal
Published: June 2023

e18701

Background: Breast cancer care is complex and requires coordination of interdependent events and patient communication to reduce delays and missed treatments. Preliminary research has suggested that mobile health interventions may be more user friendly and can impact disparities. We report a feasibility pilot use of a HIPAA compliant mobile application developed based on human factors research to allow patient navigators and care teams to discuss cancer patient care, share information and allow chat and text communication with patients and their invited support. Methods: We offered 26 consecutive newly diagnosed breast cancer patients the option to enroll in the study at the start of the treatment. Consenting patients were trained and invited to download and install the mobile application: MyCureTeam. The patients had the option to invite their loved ones or to designate a surrogate on their behalf. The surrogacy would help overcome adoption barriers like not having a smartphone or difficulty navigating the mobile application. We invited patients completing four or more weeks of use to complete a 27 questions survey consisting open-ended questions to be responded on a five-point Likert-scale to obtain qualitative data regarding their perception of the mobile application and its utility navigating their breast cancer journey. We offered patients completing the survey a $20 gift card. We started the project as a quality improvement initiative. We obtained ethical approval prior to dissemination of the results. Results: 25/26 patients consented to using the application. All patients were female with median age of 64.5 yrs (range: 41-87). 17 (68.0%) were above the age of 60 yrs. 19 (76.0%) women were non-Hispanic African-American. 5 patients designated surrogates on their behalf. All the surrogates were children. 35 invitations were sent to participate in patient care; the acceptance rate was 80%. 16 patients completed the follow-up survey. 94% of patients found it easy to download and use the application. Patients used the application to communicate with their providers, invite their support, check their tumor profile, and check on appointment and treatment schedule. A large majority agreed it provided support, made their care easier, would use it throughout their treatment, and would recommend it to other patients. 36% of patients used the patient portals and 75% preferred the App to the portal. Conclusions: This experience supports the feasibility of using a mobile application for patients to communicate with care team, involve their support, give access to details regarding the tumor, keep track of appointments and interventions. The concept of surrogacy in digital health needs further investigation as does involving patients’ support. The adoption rate of 96% in a largely elderly black population from a medically underserved area warrants further investigation.
Standardization of pregnancy screening prior to chemotherapy: A quality improvement project.
Authors: Shah Nirja , Laughlin Amy Iarrobino , Warner Terra
Published: June 2023

e18702

Background: Administering chemotherapy during pregnancy is considered a serious adverse event, especially during the first trimester. NCCN and QOPI Certification program standards require assessing and documenting pregnancy status for women of childbearing age before first administration of a new chemotherapy regimen. However, guidelines and policies lack standardization on patient selection. We aimed to understand and address barriers to pregnancy testing prior to initiation of chemotherapy at a large regional cancer center. Methods: An institutional guideline was developed recommending a qualitative serum beta hCG test prior to each chemotherapy cycle (≥21 days apart) for females ≤ 55 years with an intact uterus and ovaries who are not postmenopausal. A retrospective chart review between 1/2022 and 6/2022 using systematic sampling and the above algorithm revealed a baseline compliance of 17% (5/30) of patients undergoing a pregnancy test within 7 days of starting chemotherapy. In an effort to improve compliance, the guideline and educational email was sent out 08/2022 to medical oncologists, nurse educators, nurse navigators, and pharmacists. An automated nudge in the electronic health record (Epic) was added to prompt guideline concordant pregnancy testing at the time of chemotherapy treatment plan ordering. Assessments were conducted at the end of each month by systematic sampling of 20 eligible patients. Compliance was determined according to institutional guideline. Results: Among 20 assessed eligible patients per month, an average of 15.75 pregnancy tests were administered, an increase from baseline 17% compliance to 76% sustained over a 5 month period. Of the 100 cases abstracted, no pregnancies were detected. Conclusions: Electronic health record nudge in conjunction with institutional guideline and education, led to an increase in appropriate pregnancy testing prior to initiation of chemotherapy. This approach demonstrates feasibility of achieving NCCN and QOPI standards while tailoring the intervention to patients of childbearing potential. [Table: see text]
Improving guideline-concordant biomarker testing through implementation of a precision cancer medicine steward.
Authors: Kajdic Hodzic Rifeta , Plotkin Elana , Boehmer Leigh , Kim Joseph , Raez Luis E. , Enstad Crystal , Rice Courtney , dela Rama Frank
Published: June 2023

e18706

Background: Gaps in guideline-concordant cancer biomarker testing exist in real-world clinical practice. Medically underserved populations, in particular, face significant challenges to accessing the latest advances in cancer diagnostics. As community cancer programs work to expand their approach to precision medicine, some have created a precision medicine “steward” who acts as a point person for removing barriers to biomarker testing. The Association of Community Cancer Centers (ACCC) explored the clinical utility, impact, and feasibility of having a precision medicine steward on the multidisciplinary cancer care team. Methods: ACCC held a series of focus groups and interviews with a diverse group of stakeholders to explore how cancer programs had justified, hired, trained, and utilized precision medicine stewards to improve guideline-concordant biomarker testing rates. ACCC examined select job descriptions, learned how stewards helped improve biomarker testing processes, and developed a framework for how a steward can fit into cancer care teams’ clinical and operational workflows. Results: Precision cancer medicine stewards can help improve biomarker test ordering processes. In one member program, turnaround time from test ordering to receipt of results decreased from an average of 24 days to 12 days and the quantity non-sufficient rate of testing decreased by five percent. Stewards also helped to improve the digitization of test orders, streamline prior authorizations, track tissue specimens, and notify oncologists when quantity of tissue was not adequate for testing. Stewards contributed to precision medicine workgroups that vetted reference laboratories, tracked key performance indicators around biomarker testing, and prioritized opportunities to reduce testing disparities. ACCC also collated examples of job titles, job descriptions, and role responsibilities of precision medicine stewards to share across member programs and practices. Conclusions: Guideline-concordant biomarker testing requires multiple complex steps and careful care coordination. Precision cancer medicine stewards have been shown to improve testing-related processes, decrease the time from ordering to receipt of results, and assist with prior authorizations. ACCC will work to further highlight their contributions on the multidisciplinary cancer care team and document more evidence of their return on investment for cancer programs and practices.