bluuebunny/crossref_metadata_2025_split huggingface dataset:
Limited health literacy in Hispanic caregivers of children with cancer and childhood cancer survivors.
Authors: Aristizabal Paula , Bird Victoria , Robles Joanna , Nodora Jesse , Martinez Elena 
Published: October 2023

190 Background: Health literacy (HL) is the individual’s ability to find and use information and services to make health decisions. Limited HL is associated with poorer outcomes. HL is vastly understudied in childhood cancer. Thus, we investigated HL and associations with Social Determinants of Health in caregivers of children with newly diagnosed cancer and of childhood cancer survivors. Methods: We conducted a prospective cross-sectional study in caregivers of children with newly diagnosed cancer and caregivers of childhood cancer survivors at Rady Children’s Hospital (2016-2019). Caregivers completed questionnaires in-person to assess sociodemographics, acculturation and HL with the Test of Functional Health Literacy (S- TOFHLA) and the Newest Vital Sign (NVS). Results: 459 caregivers were enrolled (199 caregivers of children with newly diagnosed cancer and 260 caregivers of childhood cancer survivors). 56% (n=256) were Hispanic and of those, 38% were Spanish-speaking, and 53% had low acculturation. Hispanics, compared to non-Hispanic Whites, had lower S-TOFHLA and NVS scores (p<0.001). Moreover, Hispanics had lower income (p<0.001) and lower education attainment (p<0.001), and were more likely to have public insurance (p<0.001), and unmarried marital status (p<0.001). Adjusted multivariable regression showed a higher odds ratio (OR) of limited HL in caregivers with education level of high school or less (OR=3.040, 95%CI:1.308,7.087), unmarried marital status (OR=2.573, 95%CI:1.065, 6.424), and Spanish as preferred language (OR=5.072, 95%CI:1.960,14.018). Conclusions: We found that Hispanic and Spanish-speaking caregivers of children with newly diagnosed cancer and caregivers of childhood cancer survivors were at higher risk for limited HL. Hispanics were also more likely to have public insurance, unmarried marital status, and lower education level. In underserved groups such as these, HL is an especially critical component of navigating cancer care and making informed health decisions. It is, therefore, essential to direct future research efforts towards developing interventions to improve HL in underserved populations to improve cancer clinical outcomes.
Multidisciplinary education and action to foster equitable cancer care.
Authors: Augustyniak Monica , Eldridge Karen , Gurtler Jayne S. , Muluneh Benyam , DePue Amy , Rodriguez-O'Donnell Julia , Atkinson Stacy , Peloquin Sophie , Murphy Ann , Lazure Patrice 
Published: October 2023

193 Background: Disparities in cancer care occur when patients are offered inequitable quality of care due to socioeconomic characteristics, affecting patient outcomes (e.g., survival rates). A five-part education (three articles, a webinar, and an infographic) was designed for multidisciplinary oncology care team members to build an enhanced awareness of cancer care disparities and inspire action to foster equitable cancer care. This study evaluated the impact of the education on the learning outcomes of participants. Methods: The evaluation combined quantitative and qualitative methods assessing learners’ knowledge, confidence, change in practice and barriers to change. Collected data included 1) matched pre- and post-activity questions, 2) a post-activity survey evaluation, 3) a post-activity 30-minute interview. Where relevant, categorical data were recoded into binomial values (e.g., 0=incorrect, 1=correct) and knowledge-based responses computed into scores (0-100%). Quantitative data was subject to descriptive and pre-post analysis (McNemar statistical tests for binomial values, paired t-tests for continuous values). Qualitative data (Interview transcripts, open-field responses) were subject to inductive thematic analysis. Results: Of 2,850 completers, 1,151 were graduated healthcare professionals (58% nurses, 23% advanced practice providers, 11% physicians, 8% other), involved in cancer care in the United States. Across all activities, knowledge scores for cancer care disparities and strategies to foster equitable care were significantly higher post-activity (79-91%, depending on activity) than pre-activity (23-62%, p<.001). Similarly, the percentage of learners that were confident in their ability to a) address the personal factors impacting a patient’s willingness to pursue screening or treatment and b) identify practices that can foster equitable care to all cancer patients were significantly higher post-activity (51-75%) than pre-activity (27-38%, p<.001). Thematic analysis of qualitative responses showed that learners identified the following strategies to ensure equitable cancer care: a) multidisciplinary collaboration, b) open lines of communication with patients, c) frequent follow-ups, and d) community outreach. Barriers to change included a lack of organizational capacity and shortage of staff. Conclusions: This intervention encouraged multiple professions in oncology care to learn and reflect on factors driving disparities in cancer care. The intervention was shown to be impactful on the educational outcomes of healthcare professionals in terms of identifying strategies that can tangibly enhance cancer care equity and resulting patient outcomes. A sensitisation and problem-solving approach during the five activities underscored the importance of a multidisciplinary collaboration as a key strategy to addressing cancer disparities.
Establishing an oncology stewardship committee during the era of drug shortages.
Authors: Cook Rachel J. , Jiing Susie , McCord Keren , Kardosh Adel , Diaz Amber , Lindemulder Susan , Hayes-Lattin Brandon M. 
Published: October 2023

212 Background: Chemotherapy shortages are common, causing rationing when demand exceeds supply. Hospital systems and pharmacies are responsible for chemotherapy ordering - there is no national distribution system. There is risk for inequitable and/or unethical allocation of scarce resources. Prescribing providers are at risk when making individual allocation decisions and leave themselves exposed to medicolegal risk. Given the frequency of supply shortages of antineoplastic, biologic or cellular therapies, we identified a need to create a framework for management of limited supplies and prioritization of allocation decisions. Methods: To ensure a consistent and transparent approach, the Oncology Stewardship Committee (OSC) was established, compromised of multidisciplinary representatives (adult/pediatric physicians, pharmacists, social workers, nurses, and ethicists). The committee based its work on a framework of ethical values and guiding principles, including maximizing benefits (urgency of need, likelihood of benefit, availability of alternatives) and fairness (not upon patient demographics, ability to pay, or financial impact to the health system). A tiered plan for each therapy in shortage was created (table), starting with monitoring and escalating to mitigation through conservation, allocation through a vetted pathway with an appeal process, and up to randomization if all other options were exhausted. Results: The OSC was assembled, agreed upon principles and processes, and launched in 2022. An example for which management escalated to “Tier 3” was fludarabine. During active management of fludarabine, 238 eligible patients were considered, 158 met restriction criteria and 80 were assigned an alternative therapy. Conclusions: The formation of an institutional OSC allowed for improved transparency and equitable allocation of scarce resources. In future, this framework will be used for ongoing drug shortages in addition to management of non-formulary requests.[Table: see text]
Recruitment of informal caregivers into research studies in community oncology practices: Results from the 2022 NCI Community Oncology Research Program (NCORP) Landscape Committee Assessment.
Authors: Wang Ying , Nightingale Chandylen L , Braun-Inglis Christa M , Sterba Katherine R. , Weaver Kathryn E. , Wood Eden , Kadambi Sindhuja G , Gada Umang , Montes Alexander , Magnuson Allison , Yilmaz Sule , Culakova Eva , Strause Sarah , Kamen Charles Stewart , Mustian Karen Michelle , Morrow Gary R. , Mohile Supriya Gupta , Loh Kah Poh 
Published: October 2023

219 Background: Understanding experiences of community oncology practices in recruiting informal (unpaid/family) caregivers into research studies can inform resources and strategies to improve their enrollment. In this study, we aimed to describe the recruitment of informal caregivers for research studies in community oncology practices. Methods: The 2022 cross-sectional Landscape Assessment of National Cancer Institute Community Oncology Research Program (NCORP) assessed research capacity among network oncology practices. The University of Rochester Cancer Center (URCC) NCORP Research Base used these data to examine factors associated with the recruitment of informal caregivers into research studies in community oncology practices, adjusting for region of the country, practice ownership type, and total number of oncologists in logistic regression analyses. Results: Information was available from 517 discrete practices representing 271 practice groups. After excluding those serving pediatric patients exclusively (n=12) and missing information on recruitment of informal caregivers (n=1), 258 practice groups were included in final analyses. The practice groups had on average 20 oncologists [standard deviation (SD) 28.8]. Over 70% of practice groups (190/258) had advanced practice providers (APPs) involved in clinical research activities. Less than one third of practice groups (30%, 78/258) had experience recruiting informal caregivers of oncology patients for research studies. Informal caregivers were recruited in the following settings: medical oncology (97%, 76/78), radiation oncology (24%, 19/78), survivorship clinic (14%, 11/78), and surgical oncology (10%, 8/78). On multivariable analysis, having a greater number of oncologists [odds ratio (OR) 2.40, 95% Confidence Interval (95% CI) 1.23 - 4.67] and having APPs involved in clinical research activities (OR 2.32, 95% CI 1.13 - 4.76) were positively associated with experience recruiting informal caregivers for research studies. Conclusions: Most community oncology practices did not have experience recruiting informal caregivers of oncology patients, which may reflect limited research in this area. Future research should explore barriers for recruiting informal caregivers into research studies, especially in practices that may have fewer resources such as small community oncology practices or those without APPs involved in research activities.
Acceptability to patients and caregivers of a prognostic tool for near-term death from advanced breast cancer.
Authors: Ray Emily Miller , Carda-Auten Jessica , Hilton Alison , Elston Lafata Jennifer Elston , Reeder-Hayes Katherine Elizabeth , Teal Randall , Stover Angela M. 
Published: October 2023

233 Background: Oncologists struggle to know which patients are near the end of life to enable timely transitions to supportive care. We developed and validated a breast cancer-specific prognostic tool for near-term death using electronic health record data from CancerLinQ Discovery, a national oncology database. In our prior work, oncology clinicians described the tool as potentially beneficial in considering whether to continue cancer-directed treatment, providing prognostic information to patients who want it, planning for supportive care, and guiding patient conversations. To prepare for implementation of the tool in usual care, we sought to understand the perspectives of patients with metastatic breast cancer (MBC) and caregivers regarding discussions of prognosis and use of the tool. Methods: We identified patients with MBC and caregivers through the UNC Breast Oncology Clinic. We conducted in-depth, semi-structured interviews by phone to assess participant beliefs and experiences about discussing prognosis with their oncologist and potential benefits and harms of using the tool in usual care. Interviews were audio recorded and transcribed, and data were analyzed using a coding-based thematic analysis. Results: We conducted 19 in-depth interviews (11 patients and 8 caregivers) from July 2022 to February 2023. Patients and caregivers had varying preferences for conversations regarding prognosis, ranging from not wanting to discuss prognosis to identifying preferences for the content and timing of these conversations. Perceived benefits of a prognostic tool included helping them make decisions about more cancer treatment versus increased supportive care, signaling the need for more end-of-life resources, decreasing uncertainty, and helping plan for the future. Among patients and caregivers who perceived risks of the tool, most identified general concerns related to discussions of prognosis, including provoking anxiety, signaling for a patient to “give up,” and suggesting to a patient their clinician had given up. Others identified specific concerns about the tool, including the possibility of receiving incorrect information. Conclusions: Implementation of a prognostic tool for near-term death from advanced breast cancer into routine clinical care must consider the perspectives of patients and caregivers with different preferences for prognostic information. Objections to use of the prognostic tool centered on beliefs regarding the appropriateness of prognostic discussions overall, rather than the specific role the tool would play in the discussion. Next steps include studying how to elicit patient and caregiver preferences for prognostic information in the clinic and how to help oncologists initiate serious illness conversations and utilize this prognostic tool in a way that aligns with patient and caregiver preferences.
End-of-life chemotherapy and palliative care utilization among patients with breast cancer treated at a safety-net system.
Authors: Bell Lauren , Li Hsiao Ching , Syed Samira K. , Delgado Ramos Glenda Maria , Unni Nisha , Sadeghi Navid 
Published: October 2023

241 Background: End-of-life chemotherapy (EOL-C) is associated with a decline in quality of life and increased cost of care. Despite these findings and recommendations of professional and national organizations, EOL-C remains a common practice. Studies have suggested that early referral to palliative care may reduce the likelihood of receiving chemotherapy within the last 30 days of life. We sought to describe the palliative care referral pattern and cancer-directed agent administration at end-of-life among breast cancer patients at a safety-net health system. Methods: Parkland Health (PH) is the safety-net system in Dallas County and is affiliated with the University of Texas Southwestern Simmons Comprehensive Cancer Center. After Institutional Review Board approval, we retrospectively identified patients who died from metastatic breast cancer at PH between 2017 and 2021. Data on demographics, disease and treatment characteristics, and palliative care referral/evaluation were obtained by chart review. EOL-C was defined as planned or administered treatment with cytotoxic agents, immunotherapy, and/or targeted agents (oral or intravenous) within the last 30-days of life. Results: Between 2017 and 2021, 109 patients died from metastatic breast cancer at PH. Median age at diagnosis and death were 52 and 55, respectively. Most patients belonged to racial and ethnic minorities: 41.3% Hispanic, 41.3% Black. Breast cancer was hormone receptor positive/HER2 negative in 53, HER2-positive in 29, and triple negative in 27 patients. Thirty-three patients (30.3%) received or were planned to receive EOL-C: 15 IV (11 administered, 4 planned) and 18 PO. An additional 3 patients received clinic administered non-chemotherapy treatments (leuprolide, fulvestrant, zoledronic acid). Rate of EOL-C was 33.3% (15) in Hispanics and 26.7% (12) among Black patients. Majority of patients were referred to palliative care (79, 72.5%), however, only 46 (42.2%) completed a visit. In the EOL-C group, 84.8% (28) of patients were referred to palliative care and 42.4% (14) completed a visit. Median time between palliative care referral and death was 509 days among patients who completed a visit vs. 53 days in those who did not. Conclusions: Compared to other studies, we observed a higher rate of EOL-C in our patient population. In addition, less than half of the patients in our study completed a palliative care visit before death. Late palliative care referral, timely access, understanding the benefit of the service, low health literacy, language barrier, cultural considerations, and physicians’ perception are likely contributors to pattern of care. As our next step, we plan to study systemic barriers that impact access to and utilization of palliative care service among cancer patients at our safety-net system.
Impact of hospice enrollment timing on overall survival and quality of life indicators in patients with pancreatic ductal adenocarcinoma (PDAC).
Authors: Paredes Rodrigo , Banegas Marcela , Sucre Santiago , Ponce Cristina , Peters Mary Linton Bounetheau 
Published: October 2023

243 Background: This study aimed to examine the effects of hospice enrollment timing on survival and end-of-life quality of life indicators for pancreatic ductal adenocarcinoma (PDAC) patients. Methods: A retrospective chart review of 152 patients with biopsy-proven PDAC from August 2009 to December 2022 at a single center was conducted. Patients were categorized based on hospice enrollment timing: Early-Hospice (EH) (≥ 60 days before death), Late-hospice (LH) (< 60 days), and No Hospice (NH). Parameters assessed included overall survival (OS), palliative care service interaction, treatment lines, time from last chemotherapy treatment to death, hospital utilization after last chemotherapy treatment, documentation of advance care directives (ACD), and place of death. Statistical analysis was performed using Chi-squared test with Yates' continuity correction and Kruskal-Wallis test. The time-to-event endpoint was estimated using the Kaplan-Meier method. Results: Analysis of 152 patients showed that hospice enrollment timing did not significantly influence OS in PDAC patients (p=0.6). Median OS for EH (n=10), LH (n=84), and NH (n=58) groups were 10.1 months, 15.7 months, and 12.5 months, respectively. Subgroup analysis of patients with unresectable tumors at diagnosis (EH [n=7], LH [n=61], and NH [n=40]) showed no statistically significant difference in survival (9.19 vs. 12.22 vs. 9.08, p=0.08). The time from first interaction with the Palliative Care team to death was not different between groups. However, patients in EH had a notably longer median duration between their last chemotherapy session and death compared to LH and NH (201 vs. 43 vs. 31.5 days, p<0.01), as well as fewer days hospitalized after the last chemotherapy session (0.5 vs. 5 vs 8 days, p=0.02). Hospice enrollees had a substantially higher rate of documented ACD, and were far more likely to die at home. Conclusions: Although the timing of hospice enrollment did not significantly impact overall survival in PDAC patients, it played a significant role in influencing end-of-life quality of life indicators. Interaction with the palliative care team did not vary across groups, implying that hospice referral by oncology is acceptable and effective. However, documentation of ACDs for non-hospice enrollees was very low, a clear area for improvement.[Table: see text]
Hospital utilization in patients with advanced-stage cancer who refused anti-cancer treatment.
Authors: Akpoviroro Ogheneyoma , Sauers Nathan Kyle , Akpoviroro Oghenetejiro Princess , Uwandu Queeneth , Castagne Myriam , Rodrigues Elga , Mirza Wasique , Bolden Brian 
Published: October 2023

246 Background: We sought to describe hospital utilization (HU) in patients with advanced-stage cancer who refused treatment and to determine if palliative medicine referral was associated with any changes in HU. Methods: We performed a retrospective chart review of patients diagnosed with advanced-stage malignancies, aged 18-75 years, between 01/01/ 2010 and 12/31/2015, who refused any form of therapy. HU was measured as a sum of emergency department (ED) visits, ED-to-inpatient admissions, and direct inpatient admissions. Results: The study population was composed of 508 patients. The mean age was 63.1 years (standard deviation (σ) 8.1); females composed 39.6% (201/508). HU prevalence was 61.8% (314/508). In female patients, HU occurred in 60.2% (121/201), compared 62.9% (193/307) in male patients (p=0.545). Palliative medicine referral occurred in 17.7% (90/508). When HU was evaluated according to palliative medicine referral, 68.9% (62/90) of patients who were referred to palliative medicine had HU, compared with 60.3% (252/418) who were not referred to palliative medicine (p=0.128). The mean number of hospital visits (NHV) in the population was 1.0 (SD 1.3). In palliative medicine-referred patients, the mean NHV was 1.1 (SD 1.2), and 1.0 (SD 1.3) in patients not referred to palliative medicine (p=0.435). In the total population, ICU admissions occurred in 17.1% (87/508). In patients referred to palliative medicine, ICU admissions occurred in 11.1% (10/90). In patients not referred to palliative medicine, 18.4% (77/418) had ICU admissions (p=0.095). In the total population, the average number of ICU admissions was 0.2 (SD 0.4). In palliative medicine-referred patients, the average number of ICU admissions was 0.1 (SD 0.4). In patients not referred to palliative medicine, the average number of ICU admissions was 0.2 (SD 0.4); p=0.141. Conclusions: Hospital utilization occurred in approximately 60% of patients with advanced-stage cancer who did not accept treatment. Sex was not associated with hospital utilization. The average number of hospital visits remained consistent, whether patients were referred to palliative medicine or not. While a slightly higher prevalence of ICU admissions was observed in patients who were not referred to palliative medicine, this difference did not reach statistical significance, and the number of ICU admissions was comparable regardless of palliative medicine referral. Of note, we did not evaluate if early palliative medicine referral influenced HU compared with later palliative medicine referral.