bluuebunny/crossref_metadata_2025_split huggingface dataset:
How to close the care gap: Factors hindering the use of BRCA mutation profiling of patients with breast cancer and ovarian cancer in a real world setting.
Authors: A. Muneer V. , Harindran Vallathol Dilip V. , Sankar Uma V. , Warrier Narayanankutty Edavalath , P. S. Sreedharan , K. V. Sajeevan , Parameswaran Prasanth V. , P Gopika V 
Published: June 2023

e18636 Background: The majority of hereditary breast and ovarian cancers are linked to BRCA1/2 mutations. However, in patients with a suggestive personal or family history, a specific predisposing gene is identified in < 30% of cases. Mutation testing is recommended for individual genes in the appropriate clinical setting with a high suspicion index for a specific mutated gene. The risk of contralateral breast cancer increases with the time since the first breast cancer, reaching 20%–30% at ten years of follow-up and 40%–50% at 20 years, depending on the gene involved. Methods: The study assessed the prevalence of BRCA testing among young breast cancer women (age less than 50 years) and explored the factors hindering the performance of the BRCA mutation test. Among the 3400 breast cancers reported from 2017 to 2022, 46.17% (n = 1570) of young breast cancer women were advised for BRCA testing. We administered the questionnaire on factors influencing the BRCA mutation profiling performance to all the young breast cancer women (n = 1532). The data was collected from the electronic medical records and the department of molecular oncology. We performed regression analysis to predict the act of BRCA mutation profile testing. Results: Among them (n = 1570), only 17.70% (n = 278) performed BRCA1/2 genetic testing. In 278 patients who had undergone BRCA testing, pathogenic or likely pathogenic BRCA1/2/HRR mutations were detected in 52 patients (18.7%). 38 (13.7%) with BRCA 1, 14(5%) with BRCA2. Somatic with HRR testing was done in 13(4.6%), Somatic testing in 37(13.3%) and germline testing was done in 228 (82%). BRCA mutation was detected in 18 (34.6%) patients with breast cancer, 32(61.5%) patients with ovarian cancer. The factors influencing not performing the BRCA testing were the higher Cost of the test (83.4%), delay in getting the result (32.4%), unawareness of the importance of the test (52.6%), and not being advised by the physician as a mandatory test to perform (47.6%) and male spouse as a decision maker (31.8%). Conclusions: BRCA mutation profile test is mandatory to know their recurrence risk and treatment decisions for opting for PARP inhibitor. But the Cost of the test is the main barrier to performing this in a low-middle-income country setting. Female gender and related decision-making conflict could be the other reasons not to perform the test.
Impact of primary language on health inequities in multiple myeloma.
Authors: Conic Julijana Zoran , Alavi Navid , Hora Mehar , Bell Britney , Ruiz Lopez Jorge , Edwards Camille Vanessa 
Published: June 2023

e18640 Background: Limited English proficiency (LEP) has been shown to exacerbate health inequities in the US due to difficulties navigating a complex health system and assimilating complicated information regarding diagnosis, and treatment. Advances in multiple myeloma (MM) care have improved clinical outcomes but added complexity to diagnosis and treatment. However, there is limited data on whether LEP impacts health inequities in MM care. We sought to assess the impact of primary language on MM care and outcomes at our safety net hospital, serving a culturally and linguistically diverse population where patients have equal access to novel agents and autologous stem cell transplant (SCT). Methods: We retrospectively studied 213 patients with newly diagnosed MM between January 1st, 2000, and December 31st, 2021. Data were extracted from electronic medical records. Patients were classified as LEP or EP based on self-reported language at the time of diagnosis. Patients were subsequently propensity matched based on age, sex, type of insurance, Charlson comorbidity index, creatinine, LDH, year of MM diagnosis, ISS stage, presence of high-risk cytogenetics, and receipt of SCT. Type of insurance was used as a surrogate for socioeconomic status. Kaplan Meier estimate and log rank tests were used to assess overall (OS) and progression free survival (PFS). Results: Of 213 patients, 75 (35.2%) had LEP, 135 (63.4%) were black, 49 (23.0%) were white, 22 (10.3%) patients were of another race, and 7 (3.3%) did not self-identify. Mean age was 63.6 (SD ± 11.4), and 114 (53.5%) patients were male. Median follow-up of the entire cohort was 56.9 months. At baseline, there were no statistically significant differences in the covariates above between LEP and EP patients except for increased incidence of diabetes mellitus in EP patients (84.0% vs. 89.1%, p 0.02). More LEP patients were inpatients at the time of diagnosis compared to EP patients (36.0% [27/ 75] versus 23.9% [33/138]). Median number of hospitalizations and ED visits in the first 6 months of diagnosis were 4 and 3 versus 1 and 2 in LEP versus EP patients, respectively. There were no differences in adjusted PFS or OS between propensity matched LEP and EP patients. Conclusions: In our cohort, there were no significant differences in demographics, clinical parameters, socioeconomic status, or transplant utilization between LEP and EP patients, which allowed us to assess the association of primary language with any observed health inequities. In a setting where all patients have access to novel treatments, SCT, patient navigators, interpreters, and social workers, there were no differences in PFS or OS. However, language barriers may explain health inequities related to later diagnosis and increased healthcare utilization. LEP patients with MM may benefit from additional language-concordant resources to improve disparities.
Access to National Cancer Institute (NCI)–designated cancer centers among Native American patients with cancer.
Authors: Li Haoran , Sahu Kamal Kant , Gebrael Georges , Mathew Thomas Vinay , Tripathi Nishita , Sayegh Nicolas , Maughan Benjamin L. , Agarwal Neeraj , Swami Umang 
Published: June 2023

e18646 Background: Native Americans (NA) have some of the highest mortality rates from cancer in the US. Despite that, they face significant geographic barriers to access to cancer care. However, little study addresses disparities in accessibility in NA population. This study aims to estimate the travel distance to National Cancer Institute (NCI)-designated cancer center for NA patients in Utah and the continental US. Methods: We first retrospectively collected geographic information of patients with genitourinary cancer (NA vs. white) from Feb 1, 2013, to Jan 31, 2023. The travel distance from patients’ home zip code to Huntsman Cancer Institute (HCI) at the University of Utah was calculated using GeoData ZIP Code Distance Calculations Matrix Template. Then, the shapefile was downloaded from the NCI website. Area Deprivation Index (ADI) state decile was used to match between NA reservations and the control block groups within the same state. The travel time was calculated using Google map. Locations were mapped in ArcGIS 10.7 using coordinates and a 5-digit zip code tabulation area (ZCTA). Results: During the ten-year period of time, a total of 468 NA patients were seen in our cancer clinic. The median travel distance for NA patients vs. white patients to HCI is 190.6 mi (range: 1.1-596.4 mi) vs. 21.6 mi (range: 1.1-269 mi, p< 0.0001). In the continental US, the median travel distance from NA reservations vs. ADI-matched block groups to the nearest NCI-designated cancer centers is 186.5 mi (range 77.8-629 mi) vs. 159 miles (range 1.9-671.3 mi, p< 0.01) (Table). Map data and travel time will be presented at the meeting. Conclusions: The travel distance to HCI for NA cancer patients in Utah was almost nine times longer than that of white cancer patients. It is also significantly longer from most NA reservations to the nearest NCI-designated cancer centers compared to ADI-matched block groups. This study highlights the significant disparity in cancer care accessibility faced by Native American communities and the urgent need for action to address this issue. [Table: see text]
Opportunities and challenges to implementing a coordinated social care network for patients with cancer: Perspectives of local community based organizations.
Authors: Hassan Sirad , Girgis Abigail , Abramsohn Emily , Pinkerton El , Gross Cary Philip 
Published: June 2023

e18647 Background: Interest is growing in identifying and addressing health related social needs for patients with cancer. One proposed approach is the creation of coordinated social care networks (CSCNs) to facilitate access to community-based resources and communication between community-based organizations (CBOs) serving patients with cancer. However, little is known about the perspectives of CBO leaders’ perspectives of addressing address health-related social needs or participating in CSCNs to serve patients with cancer. Methods: We conducted qualitative interviews of CBO leaders in New Haven, CT to assess perceived barriers to and facilitators for joining a CSCN. We also assessed leaders' awareness of how their services align with cancer care guidelines to address social and material needs of patients with cancer. CBOs were identified through a resource inventory of all New Haven-based CBOs. We employed qualitative content analysis and applied the Consolidated Framework for Implementation Research (CFIR) to classify emergent themes. Results: Respondents (N = 15) representing food pantries (n = 3), transportation agencies (n = 2), financial assistance organizations (n = 2), cancer-specific advocacy groups (n = 2), homeless shelters (n = 1), and general service organizations (n = 5) participated. We identified four themes: COVID-19 impact, referral challenges to other CBOs, challenges addressing client needs, and barriers and facilitators to joining a CSCN. The strongest theme was challenges addressing client needs which aligns with the CFIR domains of inner setting and individual characteristics. For instance, CBO leaders identified significant challenges with providing resources for patients with cancer due to lack of knowledge of client’s diagnosis. The theme of referral challenges to other CBOs, which aligns with the intervention CFIR domain, was exemplified by sentiments of limited funding and resources, lack of availability of information, and desire for client privacy. The impact of the COVID-19 pandemic was a theme relevant to both the individual and inner setting CFIR domains, particularly given its lasting effect on both the general community and patients with cancer utilizing CBOs at a higher rate, contributing to longer waitlists. Lastly, barriers to and facilitators of joining a CSCN largely align with the process CFIR domain. Respondents noted that lack of funding and resistance to adapting new technologies were barriers to implementing a CSCN in the New Haven area. Conclusions: While CSCNs may be a helpful mechanism to increase coordination between CBOs to help patients with cancer, critical barriers such as capacity, funding, and technology resistance may hinder implementation.
Area deprivation index and breast cancer subtypes in young patients.
Authors: Chung Victoria , Sheen Melanie Anne , Henry Marcia , Olet Susan , Taylor Caitlin , Alberti Matthew , Peeples James , Yuan Helen , Saxena Raina , Cattie Rabia 
Published: June 2023

e18651 Background: Breast cancer (BC) diagnosed under age 40 accounts for approximately 7-9% of all BC diagnoses. Patients diagnosed with BC < age 40 have more aggressive cancers, present at later stages, and poorer outcomes. Socioeconomic status (SES), income, and education have been studied in relation to cancer incidence and prognosis. According to data reviewed from 2008 SEER database, there was no major difference in incidence of female BC among patients of varying poverty levels or annual household income and women with college education had a higher incidence of breast cancer diagnosis compared to those without college education. A composite index of these variables is categorized as Area Deprivation Index (ADI). ADI ranks census bureau neighborhoods by SES and disadvantaged metrics including income, education, employment, and housing. Louisiana and Mississippi have large areas of deprivation in rural and urban areas. Methods: We performed a retrospective chart review and collected data on 746 women diagnosed with BC < age 40 from 2012 to 2022 in single medical system (Ochsner Health System) throughout Louisiana and Mississippi. Data was collected including age at diagnosis, BMI, race, BC subtype, and zip code (to determine ADI). Data was censored for patients without zip codes. We reviewed patients’ BC subtype by ADI to determine if there is a relationship between these young patients’ BC diagnoses and ADI. Cochran-Armitage test was used to determine significance. Results: ADI State Rankings by Quintiles. Conclusions: Young women in regions of lower SES are more likely to be diagnosed with TNBC. As TNBC is an aggressive subtype in a patient population that is predisposed to aggressive BC, this data serves as rationale to increased BC outreach to women in neighborhoods of higher ADI to promote knowledge, risk reduction and early detection. [Table: see text] [Table: see text] [Table: see text]
Awareness of symptoms, risk factors, and barriers to seeking help related to breast cancer among university students in Mexico City.
Authors: Cruz Ramos Marlid , Alcalá Mariana , Fajardo Espinoza Fernanda Sarahi , Patiño Alberto , Galvez C. Lizette , Romero Jorge 
Published: June 2023

e18652 Background: In Mexico, about 15% of young women (age ≤ 40 years) have breast cancer (BC). However, only 40% of women in this age group know that they should practice self-examination, and only 30% know the proper technique. Additionally, studies carried out in this group show reasons for delaying diagnosis like emotional barriers when a sign is identified, and lack of knowledge of risk factors. The purpose of the present study is to identify knowledge about self-examination techniques, lifestyle, and risk factors that influence the development of BC in university students. Methods: In this exploratory study, we used a 10-section and 55-question questionnaire based on validated international tools such as the Cancer Awareness Measure (CAM) questionnaire (CAM), the National Survey of Trends in Health Information, and the Mediterranean Diet Score (MDS), as a healthy eating pattern. Results: A sample of 53 health sciences school students was analyzed, 93% were women, and the average age was 21 years old. 83% of the students did not feel capable of recognizing signs of BC. Regarding risk factors knowledge, 78.9% recognized using hormone replacement for more than 5 years, 32.7% early menarche age, 98.1% having a closer relative with BC, 63.4% drinking more than 1 unit of alcohol by day, 65.4% being overweight; as risk factors for BC. Interestingly, 32.7% consider being sedentary as a risk factor, however, 43.8% disagree or strongly disagree. The same happens with being overweight, the 34.6% did not recognize this condition as a BC risk. Higher meat consumption was present in 54.9% of the participants. Related to barriers to receiving medical attention if they had symptoms, 21.2% feel embarrassed and 30.8% are scared to see a doctor, 30.8% are too busy, 44.3% are worried about other things, 46.2% are worried about medical findings. Conclusions: Although there was a high recognition of non-modifiable risk, the students dismiss the lifestyle as a risk factor for BC and are not capable to recognize BC signs. It is important to develop interventions to increase knowledge of these risk factors and promote healthy lifestyles from a young age to improve BC prevention. The present study gave us information to design educational strategies, based on the identified needs, that can be implemented as a cancer prevention strategy in this age group. It is also necessary to implement BC cancer prevention education strategies in health sciences school students to improve their knowledge.
Oncologist perceptions of health inequity.
Authors: Balanean Alexandrina , Jeune-Smith Yolaine , Brown-Bickerstaff Cherrishe , Feinberg Bruce A. 
Published: June 2023

e18656 Background: The Institute of Medicine has reported on policies and practices based on assumptions and misinformation as pervading the educational, clinical, and payer sectors of health care. In these settings, unconscious bias toward marginalized populations can negatively impact patients, providers, health systems, and research. As national focus on diversity, equity, and inclusion expands, we sought to measure oncologists’ perceptions of issues surrounding health inequity in the context of patient care. Methods: In 2022, we surveyed oncologists’ perceptions of patient diversity, health inequity and disparities, unconscious bias, and their impact. Recruitment was conducted within the Cardinal Health Oncology Provider Extended Network (800 US practices). Participation was voluntary and compensated at fair market value. Results: In total, 192 oncologists responded. Of those surveyed: 48% estimated 10%–25% of their patients were in disadvantaged neighborhoods; 40% estimated 10%–25% were Hispanic or non-White; 69% estimated 10%–50% had low health literacy; and 92% estimated < 10% were of sexual/gender minority. 96% felt prepared to talk with underrepresented patients, 80% agreed that health inequities exist, and 49% agreed they are especially prevalent in oncology. The majority also agreed that health inequities cause differences in care, outcomes, and access to care (80%, 82%, and 70%, respectively). 43% thought unconscious bias adversely affects Hispanic/non-White patients, and 74% perceived health care disparities among these patients. Additionally, 73% thought they would benefit from more research/education, and 50% had educated their coworkers on these issues and provided patient resources. Conclusions: Most oncologists are aware of health inequities and their adverse impact on clinical outcomes; they desire more education and want to help underrepresented patients. Health inequity and disparity may be driven subliminally by lower-quality patient-provider communication (eg, decreased conversationality and less participatory decision-making). Efforts at filling this need in oncology should be prioritized. [Table: see text]
Demographic factors impacting time to diagnosis of diffuse large B-cell lymphoma.
Authors: McAlarney Drury , Davitt Meghan , Hosgood H. Dean , Shastri Aditi 
Published: June 2023

e18660 Background: Diffuse large B-cell lymphoma (DLBCL) is the most common form of non-Hodgkin’s lymphoma. Symptoms often include a palpable mass or fever; however, patients can be asymptomatic until the presentation of an oncological emergency, such as end organ complications or tumor lysis syndrome. Delayed diagnosis is related to spinal cord compression and an increased rate of complications from chemotherapy. We investigated factors impacting time until diagnosis. Methods: We performed a retrospective cohort study of DLBCL patients from the Montefiore Health System to determine how demographic factors impacted the time from initial symptom onset until diagnosis. Logistic regression models estimated the associations between race, socioeconomic status, and primary language spoken at home and increased time to diagnosis, stratified by insurance status. Odds ratios for increased time to diagnosis based on language were calculated, based on the number of participants with a time to diagnosis above the median value. Results: In a cohort of 1,076 patients that was 24.7% non-Hispanic White, 26.5% non-Hispanic Black, 7.25% Hispanic, and 41.5% “Other” as per information from Epic, the average time from symptom onset until DLBCL diagnosis was 115.76 days. Average time until diagnosis differed by race: Non-Hispanic White participants had the highest, while Hispanic participants had the lowest (188.4 vs 85.8, p = 0.03). Average age at diagnosis also differed by race: Non-Hispanic Black patients had the lowest age, whereas non-Hispanic White patients had the highest (57.3 vs. 67.4, p < 0.0001). Relative to patients with a preferred language of English, patients who had a preferred language that was Spanish (adjusted OR = 1.99, 95% CI = 0.97-4.06, p = 0.059), or “other” had an increased odds ratio of increased time to diagnosis (adjusted OR = 3.15, 95% CI = 1.01-9.75, p = 0.047). Conclusions: Non-English speaking patients experienced increased time to diagnosis, with non-Spanish speaking patients experiencing an even higher increase in time to diagnosis of DLBCL. Differences by racial or ethnic group supported the finding that primary Spanish speakers experience increased times until diagnosis – Hispanic participants had a lower average time to diagnosis than other racial or ethnic groups, suggesting that the effect of language alone may be greater than this analysis suggested when race and ethnicity is controlled for. Interventions targeted at increasing resources for non-English speaking patients in our diverse patient population, such as increasing the availability of interpretation services, patient literature on preventative screenings in non-English languages, and increasing the number of healthcare workers with competency in common foreign languages, may potentially reduce DLBCL morbidity.
The effect of formal education on ovarian cancer, clinical trial access, and clinical trial awareness among Black and Latino US women.
Authors: Equils Ozlem , Bakaj Amonda , Lekaj Klaudi , Nwokeleme Treasure , Onigbinge Victoria , Gonzalez Indiara , Muyah Cynthia , Muyah Fanesse , Rocheburn Brianna , Ureta Elsie 
Published: June 2023

e18667 Background: Ovarian Cancer (OC) is ranked as one of the deadliest women’s cancers in the US. Due to non-specific symptoms, it is often misdiagnosed and detected late. The mortality rate is higher and increasing among Black women. In addition, Black women have poor participation in clinical trials. We conducted a survey study among Black and Latino US women to understand the factors influencing their understanding of genetic risks of OC, clinical trial awareness and ability to access a clinical trial. Methods: MiOra health educators administered an electronic survey to 226 women in their communities in Houston, TX, Atlanta, GA, and Los Angeles, CA. The data was analyzed using two-sided Fisher’s Exact Test. Results: Out of the 226 respondents 63.4% were 30 years of age or younger and 22.9% had high school education or less (low education). Out of 109 respondents, 93 (85.3%) self-identified as Black or Latino. Age did not influence self-reported awareness of genetic risk for OC, clinical trials or how to locate a clinical trial (Table 1). Low education women were significantly less likely to report being knowledgeable about genetic risk factors of OC, clinical trials or locating clinical trials. Thirty out of 48, 62.5% responding low education women and 118 out of 173, 68.2% high education women reported to have an annual provider visit (p > 0.05). The self-reported awareness on how to locate a trial was low in both the low (3 out of 48, 6.2%) and high education groups (34 out of 171, 19.9%, p < 0.05). Only 8 out of 44 (18.1%) respondents who knew someone with OC knew how to locate clinical trials. Conclusions: These results suggest that the level of education influences Black and Latino women’s awareness of OC genetic risk factors, clinical trials and clinical trial access. However, even among college educated Black and Latino women, only a small portion reported to know how to locate a clinical trial. Both high and low education Black and Latino women reported to comply with annual provider visits. These visits may be an opportunity to close the health-literacy disparities in OC and clinical trials for Black and Latino women. [Table: see text]