tbuckley/cabot-search huggingface dataset:
Health information and technology engagement for clinical research and healthcare purposes (HITECH) survey of patients with a history of cancer.
Authors: Anahid Hamparsumian, Arash Naeim
Journal: Journal of Clinical Oncology (2024)

e13672 Background: Digital technology offers oncology clinicians and researchers the ability to more closely monitor patients on therapy, including with electronic patient-reported outcomes (ePROs) and real-time passively collected data (for example: heart rate, oxygen saturation, etc.), via smartphone and wearable devices. In order to realize the potential for these technologies to improve patient experience and outcomes, it is critical that we consider the perspectives of patients to design usable and useful digital monitoring programs. Methods: We conducted a cross-sectional survey of cancer patients from a large academic medical institution to study willingness to use digital devices to collect data and to share discrete types of data for the purposes of medical care or research. A survey including baseline characteristics and questions pertaining to digital technology use was sent to participants enrolled in the UCLA Mental Health and Health Technology Research Registry, from November 2023 to January 2024. Participants were included if they were patients at UCLA, age 18 years and older, owned a smartphone and/or wearable device, and self-reported a history of cancer. The primary outcomes of interest were willingness to collect and share digital device data. We report summary statistics for our population. Results: A total of 690 patients participated in our survey. The majority were female (58.5%), 76.7% non-Hispanic white, 8.8% Hispanic, 5.8% Asian, and 2.0% black. Median age was 69 years old. Nearly all participants reported experience using a patient portal (98.9%). Willingness to collect data using a digital device, for the purposes of clinical care was reported by 93.3% of patients. Similarly, 92.0% were willing to use a device to collect health data for research purposes. Sharing patterns were similar regardless of whether data was intended to be for clinical care or research purposes (Table). Conclusions: The overwhelming majority of patients who own a smartphone and/or wearable are willing to collect health data on their digital device for either clinical care or research. There is a preference for sharing more objective clinical information (vitals and physical activity measurements), and less inclination to share subjective information (daily activity, symptoms, and mood). This could be attributable to the greater effort required to input information as well as skepticism of the usefulness of the subjective data. Notably, we must recognize that some patients are not well-represented in this study population. Their perspectives should also be explored to prevent widening of the digital divide. [Table: see text]
Post mastectomy reconstruction choice: Do race and ethnicity play a role?
Authors: Catherine Chappuis, Stephanie Bernik, Borna Mohabbatizadeh, Lillian Huang, Mu-Hsun Chen, Elle Billman, Reanna Shah, Jacquelyn Amenta, Madhu Mazumdar, Elisa R. Port, Tara Balija
Journal: Journal of Clinical Oncology (2024)

1586 Background: The choice regarding reconstruction after mastectomy is based on multiple factors. We hypothesized that race and ethnicity are associated with decision making regarding reconstruction and choice for bilateral mastectomy among a diverse patient population with equal access to reconstructive options. Methods: A retrospective cohort study was performed of patients who underwent mastectomy with or without reconstruction for cancer or prophylaxis from 1/1/2019-12/31/2020 within a single health care system. Clinical and demographicfeatures were recorded. Study endpoints included reconstruction and contralateral prophylactic mastectomy (CPM) choice. Chi square and logistic regression analyses were performed with hypotheses tested at 5% significance level. Results: A total of 663 patients underwent mastectomy for cancer or prevention. Mean age was 54 (range: 24-93) and median BMI 25 (15-58). The majority of women included identified as Non-Hispanic White (NHW) (52%), with other women identifying as Hispanic, Asian, Non-Hispanic Black (NHB), or Other (Table). Of the total cohort, 647 (98%) patients had surgery for cancer, while 16 (2%) had surgery for prophylaxis. Among those with unilateral cancer (N=602, 91%), NHW women were more likely to get CPM (OR 2.12, p&lt;.001), while NHB (OR 0.58, p=.02) and Asian women (OR 0.47, p=.01) were less likely to choose CPM. Asian women were less likely to undergo reconstruction compared to non-Asian women (OR=0.42, p=.01), while Hispanic women were almost twice as likely to undergo reconstruction compared to non-Hispanic women (OR 1.93, p=.016). Hispanic women were more likely to undergo a DIEP flap (OR 2.77, p &lt;.001), while NHW women were more likely to choose implant reconstruction (OR 2.35, p&lt;.001). Conclusions: In our hospital system, choice for reconstruction or CPM was found to differ based on race and ethnicity. NHW women were more likely to choose CPM and undergo implant-based reconstruction, Asian women were more likely to forgo reconstruction, and Hispanics were more likely to undergo DIEP flaps. Future analysis in this cohort will include other factors such as BMI, insurance status, religion, marital status, and employment status.[Table: see text]
Effects of socioeconomic status (SES) and healthcare resource (HCR) availability on survival in Black patients (pts) versus (vs) White pts with multiple myeloma (MM): A SEER Medicare analysis.
Authors: Sophia S. Li, Robert Schuldt, Faiza Zafar, Tu My To, Archibong Yellow-Duke, Alina Levine, Allicia Girvan, Joseph Mikhael
Journal: Journal of Clinical Oncology (2024)

e13678 Background: In MM, disparities exist for overall survival (OS) by race, and many factors may contribute to these differences. This study evaluates whether SES and HCR availability impacts OS in older pts with newly diagnosed MM (NDMM) based on race. Methods: This retrospective study used linked SEER-Medicare claims (diagnosis [Dx] 6/1/2013–12/31/2017) and Area Health Resource Files (AHRFs; from 2018) to identify non-Hispanic White and non-Hispanic Black pts aged ≥66 years with NDMM. AHRFs included county-level HCR availability data (e.g. number of long-term hospital beds, medical doctors [MDs]). Continuous Medicare A and B enrollment until 12/31/2019 or preceding death was required. Pts with other cancers, Dx from death data, missing county information and enrollment in health maintenance organizations or clinical trials were excluded. Kaplan-Meier was used for unadjusted median OS and Cox proportional hazards for OS risk by race. Age, sex, race, Charlson Comorbidity Index (CCI), poverty, education, and HCR availability were included in the adjusted mixed effects Cox model. Results: We identified 6,609 pts with NDMM; 15.6% were Black. For Black pts vs White pts, median age at Dx was 76 vs 77 years, 57.1% vs 46.0% were female, and mean CCI was 2.1 vs 1.4 (p&lt;.001 for all). Within census tracts, mean percentage of pts living under the poverty line and received &lt;12 years of education was 21.2% vs 11.3% (p&lt;.001) and 19.0% vs 11.3% (p&lt;.001) for Black pts vs White pts, respectively. Unadjusted median OS for Black pts vs White pts was 2.76 vs 3.01 years (hazard ratio [HR]: 1.08; p=.063). In the adjusted model, several SES and HCR availability factors were significant. OS HR by race reversed directionality when adjusted for demographics, SES and HCR availability, but this was not significant (HR: 0.92; p=.12; Table). Conclusions: We found that Black pts with NDMM in SEER-Medicare claims were younger, had higher CCI, completed less education, and were more likely to live in census tracts with higher poverty percentages vs White pts. Several factors relating to SES and HCR availability significantly influenced OS and may drive disparities in care. Further research on larger datasets is needed to better understand these disparities. [Table: see text]
Pharmacokinetics (PK) and pharmacogenomics (PGx) of ribociclib (ribo) in Black patients with metastatic breast cancer (mBC): The LEANORA study.
Authors: Donald Smith, Ilana Schlam, Cody Peer, Tristan Sissung, Keith Thomas Schmidt, Ming Tony Tan, Ami Chitalia, Nanette H. Bishopric, Seth M. Steinberg, Hyoyoung Choo-Wosoba, Christopher Gallagher, Nadia Ashai, Kristen Danielle Whitaker, Candace Bavette Mainor, Shruti Rakesh Tiwari, Nicole Swanson, Stacy K Malloy, Claudine Isaacs, William Douglas Figg, Sandra M. Swain
Journal: Journal of Clinical Oncology (2024)

1581 Background: Ribo is metabolized by CYP3A and used for the treatment of patients with hormone receptor-positive (HR+)/HER2- mBC. FDA recommends dose reduction if used with CYP3A inhibitors due to a 3.2x increase ribo area-under-the-curve (AUC). It is unknown if modifications are needed in patients who lack enzyme activity (e.g., genetic CYP3A5 poor metabolizers (PM)). CYP3A5varies by genetic ancestry, is known to affect dosing for other drugs (e.g., tacrolimus). CYP3A5, ~85% of people of European ancestry are PM, ~85% of African ancestry are normal or intermediate metabolizers (NM, IM), which may impact ribo exposure and response. 2 percent (41/2066) enrolled in MONALEESA 2, 3, and 7 were Black. Methods: This prospective, multicenter cohort study (NCT04657679) assessed the PK and PGx of ribo (600 mg daily + letrozole/fulvestrant) in self-identified Black women with HR+/HER2- mBC. PK (0.5, 1, 2, 4, and 6 hours after ribo) and PGx studies were performed during cycle 1 via liquid chromatography with tandem mass spectrometry and PharmacoScan (ThermoFisher) microarray, which tests 1,191 genes. Including variants in CYP3A5*3, *6,and *7. Phenotypes assigned: PM (2 variant alleles), intermediate metabolism (IM; 1 variant allele), NM (0 variant alleles). The area under the curve (AUCtau) was compared with the exact Wilcoxon rank-sum test; Fisher’s exact test assessed the AEs and grade 3+ AEs to day 28. Results: 14 completed the trial. CYP3A5 phenotypes were PM (7), IM (6), and NM (1). The primary endpoint, AUC tau , was similar between CYP3A5 PM (39,230 hr*ng/mL; interquartile range [IQR]: 18,745 to 57,566 hr*ng/mL) vs. IM/NM (43,546 hr*ng/mL; IQR: 35,298 to 46,647 hr*ng/mL; p = 0.38). Other PK properties were similar between groups (table). There was a non-statistically significant higher number of AEs and grade 3+ AEs in PMs, when compared to NM/IMs. Study was not powered to assess differences in AEs. Conclusions: This cohort study detected no association between CYP3A5 genotype and ribo exposure. However, PMs may have more AEs relative to IMs/NMs. Future steps include exploring the impact of rare variants, including ~70 variants in CYP3A 4 and 5, on ribo exposure in this population. We will explore the role of clinical and genetic factors on the interindividual variability of ribo. Diverse patient representation in clinical trials is critical to ensure research findings are applicable to all patients. Clinical trial information: NCT04657679 .[Table: see text]
Advancing team science and health equity in clinical oncology using the <i>All of Us</i> Research Program dataset.
Authors: Karriem S Watson, Rubin Baskir, JoAnn Smith, Anna Mitiku, Brisa Aschebrook-Kilfoy, Katherine Y Tossas, Yvonne Collins
Journal: Journal of Clinical Oncology (2024)

e13741 Background: The All of Us Research Program ( All of Us) is one of the largest, most diverse health databases developed to expedite medical breakthroughs and is a resource for cancer researchers. The size and diversity of participants along with data types within the program, coupled with the program’s cloud based data analytics platform, encourage both team science and equitable health research outcomes. All of Us is dedicated to advancing the science of health equity with a focus on populations underrepresented in biomedical research and workforce, and embedding health equity across all aspects of the program. Methods: All of Us uses a centralized protocol where participants may elect to 1) enroll, consent, and authorize EHR, 2) answer surveys, 3) provide physical measurements, 4) provide biosamples, and 5) share data from wearables. High levels of participant diversity was achieved through an Engagement Ecosystem of outreach leaders, participants, and engagement awardees. Outreach, engagement, enrollment, and retention efforts are strategically directed by a Community and Participant Engagement Framework and a Health Equity Strategic Plan. Results: As of January 2024, health data from 413,450+ participants is available, including eight survey types from 337,500+ participants, electronic health records (EHR) from 287,000+ participants, wearable data from 15,600+ participants and whole genome sequencing from 245,350+ participants. Over 75% of participants self-identify as underrepresented in biomedical research, and about 45% self-identify as racial and ethnic minority groups. Cancer data includes history at enrollment as well as incident ascertainment via EHR (N = 26,323 total cancers and 13,067 incident cancers, from 7,544 participants assigned female at birth and 5,264 participants assigned male at birth). As of February 2024, All of Us data has been used in more than 221 publications. Of these, 35% (78) discuss cancer or oncology. More than 10% of active workspaces (921 out of 8000+ as of January 2024) include “cancer” in workspace descriptions. Commonly studied cancer types include breast, prostate, lung, ovarian, and colorectal. Conclusions: All of Us has established itself as a resource for cancer researchers. This database has the potential to provide insights into the development of treatment guidelines and emerging indicators for screening and early detection guided by health equity built on participant engagement, diversity, and broad data availability. Finally, the breadth of All of Us data also offers potential insight into cancer etiology and opportunities for prevention.
On improving clinical trial diversity: Viewpoints from underrepresented breast cancer survivors.
Authors: Kimberley T Lee, Rebecca M. Blackwell, Melinda Leigh Maconi, Carley Geiss, Susan Thomas Vadaparampil, Brian D. Gonzalez, Heather S.L. Jim, Clement K Gwede, Hatem Hussein Soliman
Journal: Journal of Clinical Oncology (2024)

e13674 Background: Racial and ethnic diversity in cancer clinical trials remains low. In this formative work, we sought to better characterize patient attitudes towards clinical trial participation. The goal is to build a framework that can be leveraged to develop an intervention to increase enrollment of participants from racial and ethnic minority groups in clinical trials. Methods: Semi-structured interviews were conducted with 10 Black and 10 Hispanic breast cancer survivors receiving care at a comprehensive cancer center in the South. Interviews were recorded, transcribed verbatim, and coded using thematic analysis. Results: Patient attitudes to clinical trials were generally positive. Many felt that trials were beneficial and a necessary part of advancing medical science. However, many expressed hesitations with regards to trial participation due to safety and efficacy concerns and distrust regarding motivation of healthcare system. Facilitators of positive attitudes towards clinical trials included positive social circles including family and community, as well as altruism regarding supporting racial and ethnic diversity in clinical trials. Conclusions: Collectively, these findings underscore the importance of implementing strategies to foster diversity in the biomedical research community, community outreach, and lay education, to improve trust in the system and therefore attitudes towards clinical trial participation in minority populations. [Table: see text]
Understanding the relationship between palliative care consultation and mental health services in patients with pancreatic cancer: A US cross-sectional analysis.
Authors: Divya S. Subramaniam, Zidong Zhang, Zachary Timmer, Elisabeth C DeMarco, Leslie J. Hinyard
Journal: Journal of Clinical Oncology (2024)

e13729 Background: Anxiety and depression can worsen symptom burden, quality of life, and end-of-life care for pancreatic cancer patients. Palliative care consultation has been used in other areas to improve holistic care and has been successful. This study aims to investigate the effects palliative care consultation on mental health (MH) service utilization, including pharmacotherapy, among pancreatic cancer patients. Methods: The sample consisted of pancreatic cancer patients within Optum’s de-Identified Integrated Claims-Clinical dataset diagnosed with new-onset anxiety or depression. Palliative care consultation (PC) within 12 months of cancer diagnosis was the exposure variable, while utilization of MH services or pharmacotherapy after depression or anxiety was diagnosed were the outcomes of interest. Covariates included patient demographics and the Charlson Comorbidity Index (CCI). The association of MH services and pharmacotherapy with PC were quantified using multiple logistic regression. Results: Within the database, 4029 patients were identified as having newly diagnosed pancreatic cancer. Of these 4029 patients, only 1022 patients received a palliative care consultation (25.36%). Of the patients that received PC, there was a higher percentage of African Americans, patients received a higher score on the CCI, and there was a higher prevalence of anxiety and depression, compared to those without PC. Notably, patients that were diagnosed with only anxiety or only depression were less likely to document treatment of each modality compared to patients diagnosed with both anxiety and depression (aOR - 0.551 for anxiety; aOR - 0.376 for depression). The specific mental health diagnosis was not the only variable that influenced mental health treatment, age, region of care, and CCI all had significant effects. Regarding palliative care, no statistically significant difference was observed between the documentation of mental health treatment between patients that received palliative care and those that did not. Conclusions: Palliative care remains underutilized among pancreatic cancer patients. This study identifies variables that influence the mental health treatment provided for patients with pancreatic cancer, and even identifies specific cohorts that are more vulnerable based on age and region of care. The findings of this study highlight information that providers can use while making clinical decisions and provide a foundation for further research determining the effects of palliative on mental health for patients with advanced, complex diseases.
Increased NGS testing and real-world clinical usage of targeted therapy: All dressed up, nowhere to go.
Authors: Ullas Batra, Shrinidhi Nathany, Mansi Sharma, Amrith Patel, Sakshi Mattoo, Anurag Mehta
Journal: Journal of Clinical Oncology (2024)

e13758 Background: National and International recommendations mandate panel- based biomarker testing for all advanced cases of NSCLC. However, analogous to uptake of many other state of the art cancer management strategies, the uptake of NGS based testing and subsequent targeted therapy varies greatly across socio-demographic groups, explained by awareness and economic restraints. This study investigates the potential differences in uptake of NGS based testing and precision medicine in advanced NSCLC patients from India. Methods: This is a single center non-interventional study where retrospective review of patient data of biomarker driven advanced NSCLC patients was carried out. The records were recovered from electronic health records of the hospital. Single gene testing for EGFR and ALK are performed using Roche Cobas V2 and D5F3 Ventana systems respectively. A machine learning algorithm: Classification and Regression Tree (CART) was employed. Results: A total of 5894 patients of advanced NSCLC were identified. Of these 33% received NGS based biomarker testing at diagnosis. The proportion of patients who received NGS tests increased over calendar time from 2014-2023, with an average increment of 15.8% every year, and peak increase in 2022 of 51%. NGS based testing yielded a positive result in 80% cases with a median turnaround time of 18.2+/-3 days. NGS detected 10.2% cases more in EGFR, 3.2% cases less in ALK, 3.1% more in ROS1. Overall NGS was able to detect 37.8% extra cases of biomarker driven cases. Among the biomarker driven, uptake of targeted therapy was 65% for MET, 83% for ROS1, 52% for RET, 17.6% for ERBB2, 63% for BRAF V600E, 75% for EGFR and 79% for ALK at any given point in the disease. None of the G12C KRAS received selective treatment owing to drug unavailability in the country. Applying the CART model, targeted therapy was received by patients younger than 68 years of age, male gender, with ECOG status 0-2, and absence of brain metastases at diagnosis. Patients with brain metastases at diagnosis, females and those &gt;69 years of age were less likely to opt for TKI(p&lt;0.02*). Conclusions: This is the largest cohort from India reporting real world uptake of NGS based biomarker testing and targeted therapy. There is a clear disparity in terms of gender and age group, possibly attributable to social stigmata and taboos prevailing in rural parts of the country. Despite increased detection rates, access to targeted therapy is still a concern owing to inaccessibility to drugs/ lack of global clinical trials in India as well as lack of patient support programs/groups.