bluuebunny/crossref_metadata_2025_split huggingface dataset:
Survival outcomes by insurance status for patients with cancer ages 18-64 and 65 or older treated in clinical trials.
Authors: Unger Joseph M. , Moseley Anna , Vaidya Riha , Xiao Hong , LeBlanc Michael Leo , Hershman Dawn L. 
Published: September 2022

154 Background: Prior studies using cancer population data have shown that patients with Medicaid or no insurance (M/NI) have worse survival outcomes than other patients, likely due to differences in access to care, staging, and treatments received. However, little research has examined the relationship between patient insurance status and outcomes for patients enrolled to cancer clinical trials, who have uniform access to protocol guided treatment and are uniformly staged and treated. Methods: We examined survival outcomes for patients enrolled to phase III or large phase II clinical treatment trials conducted by the SWOG Cancer Research Network between 1992-2019. We compared patients with M/NI to all other patients with known insurance. Patients with military/VA insurance were excluded. Multivariable Cox regression frailty models were used, with cancer cohort as a random effect and covariate adjustment for age, race, and sex. We also adjusted for clinical risk by deriving a composite prognostic score based on key cancer-specific clinical risk factors. Separate analyses were conducted for those < 65 years vs. those 65 or older. Overall, progression-free, and cancer-specific survival outcomes were analyzed. Results: In total, 29,423 patients from 51 trials comprising 27 cancer-specific cohorts were examined. Overall, 31.1% of patients were ≥ 65 years, 64.0% were female, 9.6% were Black, and 11.6% had M/NI. For all three survival outcomes, patients with M/NI had statistically significantly worse outcomes in patients under the age of 65, including a 24% increased risk of death (HR = 1.24, 95% CI, 1.16-1.32, p <.001), a 12% increased risk of progression (HR = 1.12, 95% CI, 1.06-1.18, p <.001) and a 19% increased risk of cancer-specific death (HR = 1.19, 95% CI, 1.11-1.27, p <.001). Consistent findings were observed when comparing patients with Medicaid to all other patients, and separately, when comparing patients with no insurance to all other patients. In contrast, in those 65 or older, there was no statistically significant difference in overall, progression-free, or cancer-specific survival between patients whose insurance included Medicaid (i.e., dual eligible) vs. those with Medicare alone or Medicare plus private insurance. Conclusions: Access to protocol-guided therapy ameliorates much but not all of the insurance-related disparities in outcomes previously observed using cancer population databases. For those < 65 years, despite receipt of treatment in a clinical trial, remaining disparities for those with M/NI may be due to limited access to supportive services, worse access to post-protocol therapy, or management of non-cancer related conditions. In contrast, these factors are less likely to be relevant for individuals 65 or older receiving Medicare. These findings suggest that an individual’s health insurance can meaningfully impact cancer outcomes over the longer term.
Health literacy screening in pediatric oncology and stem cell transplant caregivers: A cross-sectional cohort study.
Authors: Foti Alycia R , Beauchemin Melissa Parsons , Yao Yujing , Jin Zhezhen , Kahn Justine 
Published: September 2022

155 Background: Despite advances in childhood cancer outcomes, disparities among socially vulnerable populations persist. Associations between educational attainment, English proficiency and outcomes suggest that factors impacting communication and comprehension may contribute. Health literacy (HL) is the degree to which individuals can process and act on health information. It is reported that up to 35% of adults in the U.S. have limited HL, with prevalence rising to 50% in those from low-income households. While studies from medical oncology report associations between limited HL and inferior outcomes, there remains a paucity of data on HL rates and associated outcomes in pediatric oncology and stem cell transplant (SCT) populations. We evaluated HL rates in a group of pediatric oncology and SCT parents/caregivers at a large academic medical center, and explored associations with self-reported demographics. Methods: English or Spanish-speaking parents of children (1 – 18 years) receiving chemotherapy or SCT were eligible. Self-reported sociodemographics were collected via survey, and HL was measured via bilingual interview using the Newest Vital Sign screening tool. Scores indicating likelihood of limited (0 – 1), moderate (2 – 3) and high (4 – 6) literacy were calculated and associations between HL, demographics, social determinants of health, and clinical characteristics were explored. Results: In total, 48 caregivers had evaluable HL and demographic data; 33% were Hispanic, 27% were non-Hispanic Black, and 25% were Spanish speaking only; 53% had public insurance, and 12% did not complete high school. Forty-four patients (90%) had cancer, 51% of whom had leukemia or lymphoma. Mean HL score was 3.27 (+/- 1.90). Nine caregivers (18%) had limited HL, 18 (37%) had moderate HL, and 21 (43%) had high HL. When comparing the limited/moderate HL group to the high HL group in univariate analysis, a significantly higher proportion of those in the limited/moderate group were Spanish speaking only (p = 0.035), received less than a high school education (p = 0.002), were unemployed (p = 0.038), and endorsed material hardship (e.g., food insecurity) (p = 0.001). Across all participants, 69% sought information about their child’s diagnosis from providers, and 55% sought information from the internet. Conclusions: Among this diverse population of pediatric oncology and SCT caregivers, over 50% are at risk of limited HL. Univariate models indicate that limited literacy is associated with Spanish language preference, low educational attainment, and material hardship, however larger patient numbers are needed to evaluate adjusted associations. Analyses measuring the contribution of HL to clinical outcomes are ongoing, with early results indicating that interventions addressing both material hardship and limited literacy are urgently needed.
The association of limited health literacy with frailty, health-related quality of life (HRQoL), and health care utilization among older adults with cancer: The CARE Registry.
Authors: Stephenson Coryn , Dai Chen , Harmon Christian , Fowler Mackenzie Elisha , Giri Smith , Outlaw Darryl Alan , Hollis Robert , Bhatia Smita , Williams Grant Richard 
Published: September 2022

157 Background: Health literacy (HL) is a patient’s ability to obtain, process, and understand health information. Limited HL can act as a barrier to communication and access to medical treatment and lead to poor identification and management of comorbid conditions, resulting in frailty and impaired HRQoL; these issues remain unstudied in the geriatric oncology populations. We aimed to (1) describe the prevalence of limited HL; (2) examine the association between limited HL and frailty, HRQoL and healthcare utilization in older adults with cancer. Methods: The CARE registry prospectively enrolls older adults (≥60y) with cancer seen at UAB. Patients complete a patient-reported geriatric assessment. A single-item screening measure of HL (Stagliano et al. JABFM 2013) was also completed by the participants. Frailty was defined using the 44-item CARE frailty index (based on deficit accumulation). Multivariable analysis examined association of limited HL with CARE frailty index, HRQoL, and health care utilization, adjusting for age, race, sex, education, cancer type/stage and treatment phase. Results: The cohort included 475 participants with a mean age at enrollment of 69.4y; 61.9% were male; 18.9% were non-Hispanic Black. The most prevalent cancer types included colorectal (34.9%), pancreatic (17.5%) and hepatobiliary (11.4%) cancers. The prevalence of limited HL was 33.3%. Participants with limited HL were less educated (< HS: 23.4% vs. 4.7%, p= 0.01), older (71 vs. 68.5 years, p< 0.001), more likely to self-report as Black (26.6% vs. 15.1%, p= 0.009), and disabled (19.6% vs. 11.7%, p< 0.001). Patients with limited HL had a higher prevalence of frailty (57.6% vs 22.1%, p< 0.001) and hospitalizations (57.0% vs 45.4%, p= 0.036), as well as lower physical (39.5 vs. 46.4 p< 0.001) and mental (42.9 vs. 49.2 p< 0.001) HRQoL. In multivariable analysis, older patients with limited HL had 3.9 higher adjusted odds (aOR) of frailty (95% CI 2.4-6.3), worse physical (aOR 2.2, 95%CI 1.4-3.6) and mental (aOR 3.2 95%CI 2.0-5.2) HRQoL, and increased hospitalizations (aOR 1.8 95% CI 1.2-2.8), compared to those with adequate health literacy. Conclusions: Older cancer patients with limited HL had higher adjusted odds of frailty, lower physical and mental HRQoL scores, and higher odds of a recent hospitalization. Interventions to address limited HL should be explored in this vulnerable and growing cancer population.
Understanding the barriers and experiences of veterans with lung cancer.
Authors: Lopez Christopher , Murillo Ariana , Das Millie , Patel Manali I. 
Published: September 2022

160 Background: Veteran populations have higher lung cancer incidence and lower overall survival rates than non-veterans. Despite clinical advancements in lung cancer which reduce lung cancer death rates and access to care, many Veterans face barriers in receipt of such guideline-based care due to many factors including complex comorbidities, low health literacy, and significant economic and social disadvantages. In fact, the underrepresentation of Veterans in clinical trials confer even more difficulty to ensure cancer treatment and prognosis thoughtfully considers their unique challenges and needs. Few studies have evaluated Veterans’ perspectives regarding unmet needs and potential solutions to address equitable care delivery among these populations. The objective of this study was to evaluate Veterans’ perspectives regarding their lung cancer care to identify modifiable barriers that could be addressed to improve care. Methods: We conducted semi-structured interviews with fourteen Veterans diagnosed with lung cancer at the VA Palo Alto Health Care System. All interviews were recorded, transcribed and analyzed interviews using the constant comparative method of qualitative analysis. Results: All participants noted the main barrier to lung cancer care was transportation with inadequate financial coverage for gas and extensive commutes that contributed to significant anxiety and stress regarding their cancer care. Participants noted challenges in navigating the health system and suggested better understanding of the structure and function of cancer care team members to overcome these barriers. Participants noted difficulty comprehending and interpreting their cancer prognosis and were unaware of advance directives. All participants were unaware of precision medicine, namely molecular tumor testing or genomic cancer sequencing and its implications on their treatments. Conclusions: This study revealed critical gaps in lung cancer among Veterans in one VA facility. Targeted solutions should be considered to address barriers identified which include transportation access, proactive distress management, and knowledge regarding lung cancer care delivery.
The concerning disaggregation of gender disparity and racial disparity investigation at recent ASCO annual meetings.
Authors: Gardner Ulysses Grant , McClelland Shearwood 
Published: September 2022

164 Background: There has been a recent emphasis in the peer-reviewed oncology literature on examining disparities by gender. Such emphasis provides an excellent opportunity to provide parallel disparities analysis. The degree to which gender disparities research has been performed concomitantly with racial disparities research at prominent oncologic societies has yet to be investigated. Methods: Abstracts presented at the American Society of Clinical Oncology (ASCO) annual meeting, the largest worldwide clinical oncology conference, were reviewed. Highly-valued abstracts selected for the elite oral abstract or clinical science symposium sessions at the 2020, 2021, and 2022 annual meetings were stratified to determine the amount of gender disparities research presented. Such research was then further assessed to determine whether racial disparities were examined simultaneously. Results: From 2020-2022, a total of 1,217 abstracts were presented at the ASCO annual meetings oral abstract or clinical science symposium sessions. Of these, seven involved gender disparities examination, of which only two (29%) concomitantly examined race. No study since 2020 concomitantly examined gender and racial disparities. Conclusions: More than 70% of elite gender disparities work presented at ASCO has been disaggregated from concomitant racial disparities examination, with complete disaggregation since 2021. Gender disparities work remains a miniscule aspect of the overall elite research landscape. Future work in examining gender disparities may be best aggregated with racial disparities in order to optimize timely solutions in both areas; such work could potentially be incentivized by stipulations of future funding mechanisms.
Racial disparities in access to prescription medications among American patients with cancer.
Authors: Midha Manav Dev , Votruba Mark Edward 
Published: September 2022

173 Background: Though the associations between Black race and increased rates of financial toxicity, as well as Black race and reduced cancer survival, are well-established, further exploration of the mechanisms connecting these two phenomena is required. One channel that has not yet been explored regards access to necessary medications. Cancer may cause financial toxicity, which in turn may reduce patients’ abilities to obtain their required medications, further exacerbating the quantity and/or intensity of medical conditions. In this study, we investigate self-reported access to prescribed medications in the ten cancers with greatest incidence in the United States, regressing on Black race while controlling for covariates. Methods: From the National Health Interview Survey (NHIS) from 2000 – 2020, we extracted data on Breast, Prostate, Lung, Colon, Melanoma, Bladder, Lymphoma, Kidney, Uterine, and Pancreatic cancers. The key outcome measure of financial toxicity used was the NHIS entry “needed but couldn’t afford prescription medicines, past 12 months,” a dichotomous variable. Multivariable logistic regressions on being Black (with reference variable White), controlling for sex (except for in Prostate and Uterine cancers), age first diagnosed with the cancer of interest, having an undergraduate degree, United States citizenship, having annual income greater than $50,000, having health insurance, and year of survey, were run in RStudio (Version 2021.09.1), separately for each cancer. Alpha was set at p < 0.05. Results: In the following six cancers, Black individuals were significantly more likely to not have been able to afford a needed prescription medicine in the last 12 months: Breast (OR = 2.05, p < 0.001, n = 7328), Prostate (OR = 2.91, p < 0.001, n = 4782), Colon (OR = 2.21, p < 0.001, n = 2330), Melanoma (OR = 6.58, p < 0.001, n = 2780), Lymphoma (OR = 2.29, p = 0.004, n = 1202), and Uterine (OR = 1.66, p = 0.030, n = 1640). Conclusions: Financial toxicity-induced disparities in access to prescription medications permeate six of the ten most common cancers in the United States. Given the self-reinforcing feedback loop nature of cancer-related financial toxicity, missing needed medications, and economic standing, particularly for Black patients, there is an urgent need for public investment in programs targeted at increasing prescription medication access. Such policies could substantially reduce racial disparities in American oncology. Future research should include additional biological covariates (such as disease severity) and further address the social determinants of health.
Goals-of-care and serious illness conversations for patients with cancer with inpatient mortality.
Authors: Lee Julie Jiyun , Wheless Margaret , Domenico Henry , Martin Barbara , Bennett Marc , Green Jennifer Kiser , Agarwal Rajiv 
Published: September 2022

184 Background: Goals-of-care (GOC) and serious illness conversations are an integral part of personalized cancer care, particularly toward the end of life (EOL). Eliciting patients (pts)’ preferences and values facilitates informed decision-making throughout the disease course and enables oncologists to provide patient-centered care. Many aspects of GOC discussions and advance care planning (ACP) are inadequately understood, particularly during transitions of care when pts are hospitalized. Methods: We administered surveys to inpatient and outpatient medical oncologists of pts who died while hospitalized from 5/1/2020 to 5/31/2021. Survey items included oncologists’ knowledge of inpatient death, anticipation of pt death within six months of admission, recollection of GOC discussions taking place, and perceived barriers to GOC discussions. To better characterize EOL planning for these pts, retrospective data was collected to identify documentation of GOC discussions, advance directives, and hospice consideration in pts’ electronic health records. Results: For 75 cancer pts who died while hospitalized, 158 surveys were electronically administered with 104 responses (response rate: 66%). Pts characteristics: median age 62 (range 25-89); 63% men; 79% white; median length of hospital stay 7 days (range 1-45). Primary cancer disease type varied: 26.7% gastrointestinal, 18.7% non-small cell lung, 14.7% hematologic, 10.7% sarcoma, 9.3% genitourinary, and 19.9% other cancers. Of 104 completed surveys, responses were received from 40 inpatient and 64 outpatient oncologists. 81 oncologists (77.9%) were aware of the pt’s death prior to survey communication, 68 (65.4%) anticipated the pt’s death within six months of admission, and 67 (64.4%) recalled having a GOC discussion prior to or during the terminal hospitalization. Only 21.3% of pts had documented GOC discussions prior to admission, 33.3% had advance directives, and 22.7% had prior documentation of hospice consideration. Oncologist-reported barriers to GOC discussions included unrealistic expectations from pts or family (25%) and inability for pts to participate due to their clinical condition (15%). Oncologists commented on lack of time, lack of communication between inpatient and outpatient teams, and discordance among multiple inpatient providers as additional barriers. Conclusions: Most oncologists recalled having GOC discussions and anticipated six-month mortality for cancer pts who died while hospitalized. However, documentation of ACP and serious illness communication remained sub-optimal. Ongoing analyses are examining potential associations between patient, provider, and patient-provider relationship factors and oncologists’ survey responses. Addressing barriers to serious illness conversations across different healthcare settings is crucial to providing high-quality EOL care for cancer pts.
Patients' perceptions of treatment benefits and correlation with end-of-life quality markers in advanced malignancy.
Authors: Garg Neha , Patell Rushad , Dodge Laura E. , Miller Eric James , Halleck Jennifer , Einstein David Johnson , Buss Mary K. 
Published: September 2022

188 Background: High-quality end-of-life (EOL) care is a recognized goal for modern cancer care delivery. Illness perception is often inaccurate among patients with cancer and may be associated with the quality of EOL care. We surveyed patients receiving palliative cancer-directed therapies to assess associations between accuracy of perceived likelihood of treatment response and recognized EOL quality measures in a cohort of patients with advanced solid malignancies. Methods: Patients and their oncologists were surveyed regarding perceived benefits of palliative cancer-directed therapies. Accuracy of perception was calculated as patient-assessed minus physician-assessed likelihood of benefit, expressed as a score from -100 to 100, with positive scores indicating that the patient was more optimistic than the oncologist with regards to treatment response. For deceased patients, data on quality of EOL measures, including timing of recent chemotherapy, emergency room (ER) visits, hospitalizations, and intensive care unit (ICU) admissions, hospice enrollment, and location of death were collected. The primary outcome consisted of a composite of ER visit, hospitalization, or ICU admission within 30 days, and/or chemotherapy within 14 days of death. We tested for associations between the unadjusted mean and 95% confidence interval perception of treatment response and EOL metrics. Results: Of 69 patients, median age was 67 years (interquartile range: 61-75), and 50% were male. Cancers included lung (32%), gastrointestinal (22%), genitourinary (16%) and gynecological (16%). Treatments at time of enrollment included cytotoxic chemotherapy (65%), immunotherapy (23%) and oral targeted therapy (12%). Most patients (67%) enrolled in hospice > 7 days prior to death, and 59%, 19%, and 46% were hospitalized, had ICU admission, or an ER visit within 30 days of death, respectively. 12% received cancer-directed systemic therapy in the last 14 days of life. Patients’ accuracy of estimated treatment response was lower for patients with the composite quality outcome, suggesting poorer EOL quality, though this was not statistically significant (20.5, 95% CI: 12.4–28.7 vs. 28.5, 95% CI: 18.0–38.9, p = 0.24). Patients enrolled in hospice > 7 days before death had less accurate perception of treatment benefit (28.1, 95% CI: 20.5–35.8 vs. 13.5, 95% CI: 2.5–24.4, p = 0.03). There was no significant difference for other individual EOL quality measures (all p≥0.17). Conclusions: In this cohort of patients with advanced solid cancer, higher EOL quality measures did not correlate with accuracy of perception of treatment responses. Patients who were more optimistic compared to their treating oncologists were more likely to be enrolled in hospice for > 7 days before death. Improving EOL care for patients with advanced cancer requires more than ensuring accurate patient understanding of treatment goals.