bluuebunny/crossref_metadata_2025_split huggingface dataset:
When oncology care goes digital: A closer look at disparities.
Authors: Habouch Jad , Mane Adit 
Published: September 2021

119 Background: Oncology providers are increasingly integrating digital solutions, such as patient relationship management (PRM), to improve patient care. PRM enables patients to communicate with their clinic, view health records, receive educational materials and submit patient-reported outcomes (ePROs). However, disparities in PRM adoption and engagement in oncology care are unclear. Methods: Patients with cancer aged ≥18 years at first appointment between Oct 2017-Sep 2020 with ≥6 months’ follow-up, regardless of tumor type, line of therapy or diagnosis date, were selected from 77 US oncology clinics. Patients’ demographics, login history and digital activity data were sourced from the clinics’ PRM (Navigating Cancer). Chi-square analyses identified statistically significant differences by race/ethnicity. Results: 202,345 patients were identified as White (78%), Black (11%), Hispanic (8%), Asian/Pacific Islander (PI)/Native Hawaiian (NH; 2%) and American Indian (AI)/Alaska Native (AN; 1%) (Table). Of these, 85,020 (42%) had digital access (≥2 valid PRM logins) ranging from 46% (White) to 21% (Hispanic). Similar proportions of White, Asian/PI/NH and Hispanic patients were digitally active for 6 months (8%-13%), while Black patients lagged behind at 5% ( P<0.0001). Digital education completion, which required a patient to read all assigned materials, ranged from 26% (AI/AN) to 14% (Asian/PI/NH). Surpassing other patient groups, 32% of AI/AN patients reported symptoms via phone, followed by 16% of White patients. ePROs submission rates were 5 times higher than rates of symptom reporting via phone for all groups except AI/AN. Conclusions: This study demonstrated that White patients have higher digital access rates compared with other racial/ethnic patient groups, especially Hispanic and Black patients. Further evaluation of digital health components depicted disparities in digital, phone and ePROs engagement for all groups, except AI/AN patients, who invariably had higher engagement. No differences were observed in ePROs access. Further, disparities observed in symptoms reporting via phone were larger than the disparities seen in ePROs submissions. More studies are needed to assess other determinants of digital health disparities.[Table: see text]
Adherence to screening mammogram guidelines in the transgender/non-binary population.
Authors: Luehmann Natalie , Ascha Mona , Chwa Emily , Stockslager Caitlin , Hackenberger Paige , Termanini Kareem , Beach Lauren , Benning Christopher , Gupta Dipti , Sama Danny , Kulkarni Swati , Jordan Sumanas 
Published: September 2021

120 Background: Data is limited regarding rates of breast cancer and mammography screening within the transgender/non-binary (TGNB) population. Screening recommendations vary and there is no global consensus. TGNB patients face unique challenges that may preclude screening and risk assessment, such as barriers to accessing healthcare, lack of provider education, and limited data regarding hormonal impacts on risk. This study aims to address adherence to current screening mammogram recommendations within the TGNB population at a single hospital system. Methods: A retrospective chart review was performed using ICD codes, sexual orientation and gender identity data, and key words to identify TGNB patients that had contact with the Northwestern Hospital system between March 2019 and February 2021. Patients designated female at birth (DFAB) and age ≥ 40 with breasts at time of screening eligibility were included as well as patients designated male at birth (DMAB) and age ≥ 50 with ≥ 5 years of hormone therapy (HT). Rates of screening mammogram were evaluated along with analysis of demographic factors that may predict for or against adherence to recommendations. ASBrS and USPSTF guidelines, screening mammograms starting at age 40 and 50, respectively, were applied to patients DFAB. UCSF Center for Transgender Health and Fenway Health guidelines (screening mammogram at age 50 and ≥ 5 years of HT) were applied to patients DMAB. Results: The table illustrates screening adherence rates according to guidelines with two definitions of adherence. We evaluated patients who had screening mammogram “on-time” which was defined at age 40 or 50 with a two year grace period. We also defined adherence as having had a screening mammogram within the two year study period regardless of age. Univariate analysis and multivariate analysis evaluating for insurance status, employment status, level of education, and hormone use did not identify any factors associated with likelihood of adhering to screening guidelines in either the DFAB or DMAB population. Conclusions: Adherence to screening mammogram recommendations among the TGNB population at Northwestern Hospital system is low across all sub-groups. In contrast, the ACO rate of adherence to screening mammogram (within the last two years) at our institution for all-comers (age ≥ 50-74) in 2019 was 77.33%. Demographic data failed to elucidate any association with likeliness to undergo appropriate breast cancer screening. This disparity demands the development of initiatives aimed at increasing breast cancer screening rates for the Northwestern TGNB population.[Table: see text]
Association of pretreatment financial toxicity with time to treatment for patients with head and neck carcinoma and lung carcinoma.
Authors: Lam Sharon , Schlecht Nicolas , Rosenblatt Gregory , Mehta Vikas 
Published: September 2021

131 Background: Financial toxicity (FT) describes objective and subjective burden of costs associated with medical care. Patients with head and neck cancer (HNC) and lung carcinoma are acutely impacted by FT, as these cancers disproportionately occur in populations that are poor, unemployed, and/or of minority backgrounds compared to patients with other cancers. Our group recently published results showing delay in time to treatment initiation (TTI) was associated with poorer survival in HNC patients. Another study reported that FT was associated with worse progression-free survival in non-small cell lung cancer patients. In this study, we sought to investigate the association between FT, TTI and clinical outcomes among HNC and lung carcinoma patients, as well as predictors of FT. Methods: A retrospective analysis of 140 patients diagnosed with either HNC or lung carcinoma between January 2007 and March 2018 with quality-of-life data collected prospectively at the time of radiation oncology treatment was conducted. Participants responded to a question about their experience on ‘financial difficulties’ with a 4-point Likert Scale within the European Organization for the Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQ-C30) quality of life assessment. FT was low when patients indicated ‘1’ (not at all) or ‘2’ (a little), and high if patients indicated ‘3’ (quite a bit), and ‘4’ (very much). Chi-square test and Student’s t-test were used to compare characteristics of patients with and without FT. The association between FT and TTI and survival outcomes were analyzed using the Kaplan-Meier methods and Cox proportional-hazards regression models. Results: The study sample included 70 patients with HNC (mean [SD] age, 64.3 [12.0]; 62.7% male) and 70 patients with lung carcinoma (mean [SD] age, 69.1 [10.2]; 38.0% male). Over half (N = 80, 55.2%) reported experiencing financial toxicity (64% HNC vs. 45.7% lung carcinoma). Younger age (< 60 years), having Medicaid, and having small-cell lung carcinoma were associated with greater FT (p = 0.049, p = 0.042, p = 0.034, respectively). Patients who reported having poorer health and quality of life also experienced greater FT (p = 0.030, p = 0.016, respectively). HNC patients who experienced greater FT were less likely to experience treatment delay (p = 0.035). After adjusting for age, sex, ethnicity, tumor site, and tumor stage, FT was associated with worse survival outcomes in all patients (HR = 1.52, 95% CI 1.06-2.19). Conclusions: Greater FT was associated with younger age, having Medicaid, and having small-cell lung carcinoma. HNC patients who experienced greater FT were less likely to experience treatment delay, which suggests that delay may not be a causative factor for the worsened survival seen with patients who report FT.
Identifying opportunities to improve equity in breast cancer care for uninsured Hispanic patients in underserved communities.
Authors: Botrus Gehan , Ertz -Archambault Natalie , Kosiorek Heidi E. , Nafissi Nellie , Gonzales Miguel , Ernst Brenda , Northfelt Donald W. 
Published: September 2021

132 Background: Enhancing equitable oncologic care is an increasingly emphasized priority. Our study aims to identify aspects of breast cancer (BC) care in which differences exist based on insurance coverage. Methods: We performed a retrospective, case control study, (from 2014-2020); 39 Hispanic ethnicity uninsured patients (UP) from underserved communities with newly diagnosed BC and 119 insured patients (IP) diagnosed at Mayo Clinic Arizona (MCA). Patients were matched 3:1 for age, stage, year of diagnosis, estrogen receptors and HER-2 status. Demographic information, clinical variables, and zip code level specific socioeconomic information were compared. Continuous variables were compared by Wilcoxon rank-sum test and categorical variables by chi-square test. All patients were treated at MCA. Results: Similar treatment patterns with radiotherapy, chemotherapy and surgery were observed between groups. Primary language was Spanish for 94% of UP and English for 97.5% of IP. The majority of UP were of Hispanic ethnicity (97.4%); IP were 83.2% non-Hispanic White, 9.2% Hispanic, 3.4% African American. Zip code level information reflected more unemployment with a median of 10.6% versus 6.9% p < 0.001, percent of high school or lower (53.0 % v 23.2 %, p < 0.001), and lower income for UP (33733.5 v 64728.0 p values < 0.001).BMI was significantly higher for UP (30.6 V 24.7, p = 0.005), with presence of more co-morbidities; diabetes (28.2% v 5.0%, p < 0.001), hypertension (35.9 % v 20.2%, p = 0.046), dyslipidemia (28.2% v 12.6%, p = 0.023), metabolic syndrome (p 23.7% v 8.5, p = 0.013), and tobacco use (17.9% v 2.5%, p < 0.001). Genetics consultation was performed for 62.2% IP versus 35.9% UP (p = 0.004), lower acceptance of nutrition consultation for UP (29.4% vs 7.4%, p = 0.024). Median time from mammogram to biopsy (25.5 days vs. 14 days, p = 0.056), and interval from diagnosis to treatment (62 days vs. 39 days) (p = 0.001) were less favorable for UP compared to IP. Conclusions: In comparing the status of UP and IP with newly diagnosed BC, we identified greater prevalence of co-morbidities and adverse social determinants of health in the former group. We identified access to genetic counseling, nutrition consultation, and timeliness of diagnostic biopsy and initiation of treatment as disparate features in the care pathway. These observations allowed development of tailored interventions to achieve greater equity in delivery of BC care at Mayo Clinic.
Racial diversity and reporting in FDA registration trials for thoracic malignancies from 2006 to 2020.
Authors: Chiang Ryan S. , Glover Michael , Hui Gavin , Desai Aakash , Wakelee Heather A. , Lythgoe Mark , Khaki Ali Raza 
Published: September 2021

135 Background: Black patients have a disproportionately high incidence and mortality from lung cancer. Despite the importance of clinical trials, there continue to be significant racial disparities in recruitment for pivotal registration studies. In 2016, the FDA recommended reporting racial enrollment with a minimum of 5 categories (White, Black, Asian, American Indian or Alaskan Native [AIAN] and Native Hawaiian or Pacific Islander [NHPI]). The International Committee of Medical Journal Editors also recommend reporting race and ethnicity. We evaluated race reporting and representation in registration trials for thoracic cancers. Methods: We reviewed the FDA website and identified all new drug licensing indications in thoracic malignancies (small cell lung cancer (SCLC), non-small cell lung cancer (NSCLC) and mesothelioma) from 2006 to 2020. NSCLC was further classified as EGFR+, ALK+, other mutation and NOS (no driver mutation). Clinical trials cited on the licensing label for market authorization were recorded and the corresponding registration trial publication was identified. If race was unreported or underreported (defined as ≤3 groups) in the licensing study, then additional information was obtained from clinicaltrials.gov. We calculated the proportion of registration trials meeting FDA criteria and the proportion of each racial group in trials. Results: From 2006-2020, we identified 55 new licensing indications, involving 26 unique drugs; 5 approvals in SCLC, 49 approvals in NSCLC and 1 in mesothelioma. Prior to the FDA race reporting guidelines, 33% (6/18) of registration studies did not meet FDA requirements. This improved to 27% (10/37) after the guideline introduction. Overall 29,545 patients participated in thoracic registration trials; 66% White, 22% Asian, 2% Black, <1% AIAN, <1% NHPI, 1% other or multiple races and 9% unknown. Table shows race distribution by cancer subtype. Conclusions: Although improving, a substantial number of registrational clinical trials in thoracic oncology still do not report race per FDA guidance. In addition, Black individuals are disproportionately under-represented in registration trials. Greater efforts are needed for the inclusion of Black patients and other minorities in clinical trials.[Table: see text]
Inpatient chemotherapy for patients with advanced solid tumors: A single-center observational study.
Authors: Soumerai Tara , Lei Matthew , Mulvey Therese Marie 
Published: September 2021

158 Background: We sought to identify a population of patients with advanced-stage solid tumor diagnoses for whom inpatient chemotherapy is appropriate. In so doing, we endeavor to define standards of practice in addressing prognostic awareness and goals of therapy prior to treatment. Methods: We identified 124 patients with Stage IV solid tumors who were given at least one dose of inpatient chemotherapy in 2019. We performed manual chart review to collect information on patient demographics, details of cancer diagnosis and chemotherapy regimen, and dates of admission, chemotherapy administration, discharge, readmission, and death. Results: Ninety-four percent of patients studied were admitted for cancer-related reasons. The 30-day mortality for patients with Stage IV cancer given inpatient chemotherapy was 20.2%, including 12 patients (9.7%) who died during the same admission. The 30-day readmission rate was 40.2%. Median overall survival and readmission-free survival were both 15 days (range, 3-510 and 3-642, respectively). Among patients who died within 30 days, 18.2% (4/22) had a serious illness conversation documented prior to chemotherapy administration. Conclusions: This study demonstrates that there is a high mortality and readmission rate among patients with advanced solid tumor malignancies who receive inpatient chemotherapy. Standardizing the expectation of informed consent and/or goals of care discussion prior to treatment is necessary. This may prevent administration of futile chemotherapy to patients requiring hospitalization for advanced cancer.
Illness perceptions, financial toxicity, symptom burden, and survival in cancer clinical trial (CCT) participants.
Authors: Perni Subha , Azoba Chukwuma , Gorton Emily , Park Elyse R. , Chabner Bruce Allan , Moy Beverly , Nipp Ryan David 
Published: September 2021

160 Background: Patients’ perceptions of their illness are important for treatment decision-making and quality of life. Limited data exist describing associations of illness perceptions with other patient-centered outcomes, particularly in CCT participants. We sought to examine associations among illness perceptions and CCT patients’ financial toxicity, physical and psychological symptoms, and survival. Methods: From 7/2015-7/2017, we prospectively enrolled CCT participants who expressed interest in financial assistance programs (n = 157) and a group of patients matched by age, sex, cancer type, specific trial, and trial phase (n = 103). We assessed baseline illness perceptions (Brief Illness Perceptions Questionnaire [BIPQ] with scores > 50 indicating negative perceptions), financial toxicity (degree costs of cancer care have been a burden, moderate to catastrophic indicating financial toxicity), physical (Edmonton Symptom Assessment Scale [ESAS]) and psychological (Patient Health Questionnaire-4 [PHQ-4]) symptoms. We used descriptive statistics to examine associations of BIPQ and sociodemographic/clinical factors, financial toxicity, ESAS, PHQ-4, and overall survival. We used the Kaplan-Meier method to estimate median survival times and Cox regression to assess the association of BIPQ and overall survival. Results: Among 260 patients, 189 (72.7%) completed BIPQ surveys (median age 69 [Range 26 to 83] years, 66.1% female). 68.8% had negative illness perceptions. We found no significant associations among negative illness perceptions and patients’ age, sex, race, education, marital status, performance status, insurance, cancer type, metastatic disease status, self-reported income, trial phase, trial year, or Charlson Comorbidity Index score. Patients with negative illness perceptions were more likely to report financial toxicity (69.8% vs 48.8%, p = 0.006), and had higher ESAS-total (Medians: 44 [Range 0-89] vs 21 [Range 0-78], p < 0.001), PHQ-4 depression (Medians: 2 [Range 0-6] vs 0 [Range 0-6], p < 0.001), and PHQ-4 anxiety (Medians: 3 [Range 0-6] vs 1 [Range 0-6], p < 0.001) scores. Patients with negative illness perceptions had shorter overall survival (Medians: 22 [Range 10-29] vs 42 [Range 28-Not Reached] months, log-rank p = 0.004). Adjusting for receipt of financial assistance, patients with negative illness perceptions experienced higher risk of death (HR 1.65, 95% CI 1.10-2.48). Conclusions: In this prospective study of CCT participants, we found that patients with negative illness perceptions experienced greater financial toxicity, more symptom burden, and worse survival than those with more positive perceptions, despite comparable sociodemographic/clinical factors. These findings highlight the need to assess and address patients’ illness perceptions and financial burden when seeking to enhance patient-centered outcomes in oncology.
Effect of limited reporting in clinical trials on the ability to guide treatment decisions for real-world patients with cancer.
Authors: Enogela Ene Mercy , Gidwani Risha , Franks Jeffrey , Caston Nicole E. , Rocque Gabrielle Betty 
Published: September 2021

18 Background: National Comprehensive Cancer Network (NCCN) guidelines are derived from reviews of clinical trials. Many of these trials have strict inclusion criteria, resulting in trial samples that are not representative of the larger cancer population. We therefore sought to understand how clinical trials, referenced in the NCCN guidelines, report key patient baseline demographics relating to age, race/ethnicity, and country or geographic region. Methods: NCCN guidelines for four cancer types were reviewed: prostate, colon, breast, and lung. We abstracted race/ethnicity, age, country/geographic region, and hazard ratios (HRs) from references indexed in the NCCN Guidelines. Race/ethnicity and age information was obtained from baseline characteristics tables in reported studies. The country/geographic region from which participants were recruited was acquired from each individual trial’s National Clinical Trial (NCT) number, linked to clinicaltrial.gov or the main manuscript. Each study was also assessed for its reporting of survival outcomes based on race/ethnicity, age, and country. Results: A total of 31 studies reporting on 36 regimens were examined for this review. While all studies reported age, only 39% (n=12) included characterization of older adults (60 years or older). 52% provided information on the racial and ethnic makeup of the study sample. Countries where participants were recruited were mostly not reported in the main papers, rather they were identified from ClinicalTrials.gov. Also, while 67% of all studies (n=25) included an international sample, only 5% reported the country or geographic location in the main manuscript. Few studies reported efficacy by patient sub-population. 12 of the 31 (39%) manuscripts reported HRs by age. Of the 16 manuscripts reporting race/ethnicity, 16% included HRs by race/ethnicity. Only one study reported efficacy outcomes by country. Conclusions: There is a need to have a standardized system for reporting baseline characteristics as well as trial outcomes for clinical trials. Including information on subgroup-specific baseline and efficacy outcomes in clinical trial results is an inexpensive way of improving the quality of information available to oncologists and will aid them in making evidence-based treatment decisions for the entirety of their patient populations.
Patient-reported care satisfaction and symptom burden in hospitalized patients with cancer.
Authors: Qian Carolyn L. , Vyas Charu , Gaufberg Eva , Kaslow-Zieve Emilia , Azoba Chinenye C. , Wang Irene , Van Seventer Emily E. , Newcomb Richard , Jackson Vicki A. , Ryan David P. , Greer Joseph A. , El-Jawahri Areej , Temel Jennifer S. , Nipp Ryan David 
Published: September 2021

180 Background: Hospitalized patients with cancer often experience a high symptom burden, which may impact care satisfaction and healthcare utilization. However, research describing these patients’ care satisfaction, symptom burden, and health care use is lacking. We sought to investigate relationships among care satisfaction, physical and psychological symptom burden, and hospital length of stay (LOS) in hospitalized patients with cancer. Methods: We prospectively enrolled patients with cancer and unplanned hospitalizations from 9/2014 to 4/2017. Upon admission, we assessed patients’ care satisfaction (FAMCARE items: satisfaction with care coordination and the speed with which symptoms are treated) as well as their physical (Edmonton Symptom Assessment System [ESAS]) and psychological (Patient Health Questionnaire-4 [PHQ-4]) symptoms. We used regression models to identify factors associated with care satisfaction, and we also examined associations of care satisfaction with patients’ symptom burden and hospital length of stay (LOS). Results: Among 1,576 participants (median age = 65.0 years [range:19-96], 46.3% female, 70.9% with incurable cancer, 58.4% admitted to a dedicated oncology service), most reported being “satisfied” or “very satisfied” with care coordination (90.1%) and the speed with which symptoms are treated (89.0%). Older age (care coordination: B < 0.01, P = 0.022, speed with which symptoms are treated: B = 0.01, P = 0.001) and admission to a dedicated oncology service (B = 0.20, P < 0.001 for each) were associated with higher care satisfaction. Higher satisfaction with care coordination was associated with lower ESAS-physical (B = -1.28, P = 0.007), ESAS-total (B = -2.73, P < 0.001), PHQ4-depression (B = -0.14, P = 0.022), and PHQ4-anxiety (B = -0.16, P = 0.008) symptoms. Higher satisfaction with the speed with which symptoms are treated was associated with lower ESAS-physical (B = -1.32, P = 0.003), ESAS-total (B = -2.46, P < 0.001), PHQ4-depression (B = -0.14, P = 0.014), and PHQ4-anxiety (B = -0.17, P = 0.004) symptoms. Greater satisfaction with care coordination (B = -0.48, P = 0.040) and the speed with which symptoms are treated (B = -0.44, P = 0.041) were both associated with shorter LOS. Conclusions: Hospitalized patients with cancer report high care satisfaction, which correlates with older age and admission to a dedicated oncology service. Significant associations among higher care satisfaction, lower symptom burden, and shorter hospital LOS highlight the importance of improving symptom management and care coordination in this population.