bluuebunny/crossref_metadata_2025 huggingface dataset:
Clinical outcome and safety of selective renal artery embolization using permanent occlusive agents for acute renal bleeding
Authors: Alwarraky Mohamed S. , Abdallah Mohamed M. , Elgharbawy Mohamed S.
Published: October 2020

Background

To evaluate how far is selective renal artery embolization (RAE) using permanent agents effective in treating acute renal artery bleeding. We retrospectively reviewed the medical records of patients (n= 45) with renal bleeding who were managed by selective RAE using coils, N-butyl-cyanoacrylate glue (NBCA glue), and polyvinyl alcohol (PVA). Data retrieved included the cause, number, and type of the bleeding lesions as well as the results of the embolization for 1 year after RAE. Clinical success was the primary outcome while re-bleeding and complications were the secondary outcomes.

Results

There were 55 bleeding lesions detected by angiography in the included 45 patients. Coils were used in 23/45 patients (51.1%), NBCA glue in 15/45 patients (33.3%), and PVA in 7 patients (15.6%). Bleeding could be controlled with embolization in a single session in 41/45 patients with primary clinical success 91.1%. Four patients needed re-embolization sessions to control bleeding and only one patient was controlled, giving secondary clinical success of 92.3%. Three patients failed to respond to embolization and nephrectomy was done. Iatrogenic dissection of the segmental branch was seen in one patient. Post embolization syndrome was seen in 14/45 patients (31.1%). Non-target embolization was seen in 2 patients: one during treatment with NBCA glue and the other with PVA. No other complications were recorded. No significant differences between clinical success among coil, NBCA glue, and PVA subgroups (P> 0.05).

Conclusion

Selective RAE using permanent agents is effective in controlling renal bleeding and no significant difference among coil, NBCA glue, and PVA.
Implementation fidelity and acceptability of an intervention to improve vaccination uptake and child health in rural India: a mixed methods evaluation of a pilot cluster randomized controlled trial
Authors: Pérez Myriam Cielo , Chandra Dinesh , Koné Georges , Singh Rohit , Ridde Valery , Sylvestre Marie-Pierre , Seth Aaditeshwar , Johri Mira
Published: October 2020

Background

The Tika Vaani intervention, an initiative to improve basic health knowledge and empower beneficiaries to improve vaccination uptake and child health for underserved rural populations in India, was assessed in a pilot cluster randomized trial. The intervention was delivered through two strategies: mHealth (using mobile phones to send vaccination reminders and audio-based messages) and community mobilization (face-to-face meetings) in rural Indian villages from January to September 2018. We assessed acceptability and implementation fidelity to determine whether the intervention delivered in the pilot trial can be implemented at a larger scale.

Methods

We adapted the Conceptual Framework for implementation fidelity to assess acceptability and fidelity of the pilot interventions using a mixed methods design. Quantitative data sources include a structured checklist, household surveys, and mobile phone call patterns. Qualitative data came from field observations, intervention records, semi-structured interviews and focus groups with project recipients and implementers. Quantitative analyses assessed whether activities were implemented as planned, using descriptive statistics to describe participant characteristics and the percentage distribution of activities. Qualitative data were analyzed using content analysis and in the light of the implementation fidelity model to explore moderating factors and to determine how well the intervention was received.

Results

Findings demonstrated high (86.7%) implementation fidelity. A total of 94% of the target population benefited from the intervention by participating in a face-to-face group meeting or via mobile phone. The participants felt that the strategies were useful means for obtaining information. The clarity of the intervention theory, the motivation, and commitment of the implementers as well as the periodic meetings of the supervisors largely explain the high level of fidelity obtained. Geographic distance, access to a mobile phone, level of education, and gender norms are contextual factors that contributed to heterogeneity in participation.

Conclusions

Although the intervention was evaluated in the context of a randomized trial that could explain the high level of fidelity obtained, this evaluation provides confirmatory evidence that the results of the study reflect the underlying theory. The mobile platform coupled with community mobilization was well-received by the participants and could be a useful way to improve health knowledge and change behavior.

Trial registration

ISRCTN 44840759(22 April 2018)
Educational attainment trajectories among children and adolescents with depression, and the role of sociodemographic characteristics: longitudinal data-linkage study
Authors: Wickersham Alice , Dickson Hannah , Jones Rebecca , Pritchard Megan , Stewart Robert , Ford Tamsin , Downs Johnny
Published: October 2020

Background

Depression is associated with lower educational attainment, but there has been little investigation of long-term educational trajectories in large cohorts with diagnosed depression.

Aims

To describe the educational attainment trajectories of children with a depression diagnosis in secondary care, and to investigate whether these trajectories vary by sociodemographic characteristics.

Method

We identified new referrals to South London and Maudsley's NHS Foundation Trust between 2007 and 2013 who received a depression diagnosis at under 18 years old. Linking their health records to the National Pupil Database, we standardised their performance on three assessments (typically undertaken at ages 6–7 years (school Year 2), 10–11 (Year 6) and 15–16 (Year 11)) relative to the local reference population in each academic year. We used mixed models for repeated measures to estimate attainment trajectories.

Results

In our sample of 1492 children, the median age at depression diagnosis was 15 years (interquartile range = 14–16). Their attainment showed a decline between school Years 6 and 11. Attainment was consistently lower among males and those eligible for free school meals. Black ethnic groups also showed lower attainment than White ethnic groups between Years 2 and 6, but showed a less pronounced drop in attainment at Year 11.

Conclusions

Those who receive a depression diagnosis during their school career show a drop in attainment in Year 11. Although this pattern was seen among multiple sociodemographic groups, gender, ethnicity and socioeconomic status predict more vulnerable subgroups within this clinical population who might benefit from additional educational support or more intensive treatment.
The DISCO App: A pilot test of an electronic patient intervention to reduce the financial burden of cancer through improved cost communication.
Authors: Hamel Lauren M. , Dougherty David W. , Hastert Theresa A. , Seymour Erlene Kuizon , Kim Seongho , Assad Hadeel , Phalore Jasminder , Eggly Susan
Published: October 2020

1

Background: Financial toxicity, the burden of treatment cost, affects 30-50% of people with cancer in the US. Although experts recommend patients and oncologists discuss treatment cost to identify patients who need assistance, cost discussions occur in fewer than half of cancer treatment discussions. We pilot-tested the feasibility and efficacy of the Discussions of Cost (DISCO) App, a patient communication intervention designed to improve cost discussions and other financial toxicity-related outcomes during and following oncology treatment consultations. The DISCO App provides an individualized list of cost-related questions patients can ask their oncologist, specific to a patient’s economic situation. Methods: While waiting to see their oncologist, newly diagnosed patients with breast or lung cancer (n=32) used the DISCO App on an iPad. Clinic visits were videorecorded and patients completed pre- and post-intervention measures of self-efficacy for managing treatment costs, self-efficacy for interacting with oncologists, cost-related distress, and perceptions of the DISCO App. A trained coder observed the recordings to determine the presence of a cost discussion, the cost-related topic, and any emergent factors. Results: Findings showed increases in patients’ self-efficacy for managing treatment costs (p=.02) and interacting with oncologists (p=.001). Cost-related distress decreased but not significantly (p=.20). Patients reported the DISCO App was understandable (M=4.5 out of 5), useful as they talked with their oncologist (M=4.0), and 84% of patients reported needing less than 15 minutes to use the DISCO App. Most (94%) interactions were videorecorded (in two cases technical difficulties prevented videos from being collected); all (100%) of the videorecorded interactions included a cost discussion. The most frequently discussed topics were: insurance, time off from work, and financial navigation. Frequently, the oncologist asked the patient for his/her question list and discussed/answered the questions. Conclusions: Findings suggest the DISCO App is feasible to implement in the clinic and effective in improving patient-oncologist cost discussions and financial toxicity-related outcomes. Patient acceptance of the DISCO App and oncologist engagement suggested the intervention prompted cost discussions. Next steps include conducting a longitudinal randomized controlled trial to determine the effectiveness of the DISCO App on financial toxicity, and other outcomes. Clinical trial information: NCT03676920 .
The effects of COVID-19 on new oral oncolytic treatments.
Authors: Mitchell Rachel L. , Arrowsmith Edward , Taylor Jack L. , Schleicher Stephen Matthew , Dickson Natalie R. , McCullough Stacey
Published: October 2020

102

Background: Dependable and timely dispensing and delivery of oral oncolytics to patients with a new indication for therapy is a central part of modern cancer care. The COVID-19 pandemic has presented numerous impediments and challenges to patients receiving oral therapy from many specialty pharmacies in a timely due to remote pharmacy staffing and drug shipment. Tennessee Oncology has an integrated URAC and ACHC accredited Specialty Pharmacy to ensure the seamless care for our patients prescribed oral oncolytics. We investigated the effect of COVID-19 on the number of patients initiating care with an oral oncolytic and the time to fill during the pandemic. Methods: We analyzed the number of overall new patients to the practice and new patients receiving oral oncolytics in two year-to-year comparisons: (1) January-March 2019 vs. January-March 2020 and (2) April-May 2019 vs. April-May 2020. We then compared the average pharmacy turnaround time (defined as the time of entry of a regimen in the electronic medical record that contained an oral oncolytic until the time that prescription was ready for shipment) and the average time from regimen entry until the patient received that medication. Prescriptions received and filled on the day of order entry were recorded as a one-day turnaround time. Results: A year to year increase of 7% in practice new-patient volume was associated with a 13% increase in new oral oncolytic patients from January-March 2020. Year to year April and May comparisons, noted a 33% decrease in new-patient volume to our practice with an associated 10% decrease in new oral oncolytic patients. Time to fill remained consistent in March and April 2020 at 1.84 days vs. 1.78 for 2019. The time from regimen entry to patient shipment receipt was also stable year to year (3.10 vs. 3.06 days). Conclusions: Our in-house Specialty Pharmacy was able to continue delivery of new prescriptions for oral oncolytics during the COVID-19 pandemic. There was a fall in the number of new patient dispensing in April-May 2020 that we attribute to a decrease in cancer diagnoses related to COVID-19 as reflected by a fall in total practice new patients. New patient on-boarding activities including prior authorizations, co-pay assistance, patient education were maintained and the measured time to fill from regimen entry to patient receipt were unchanged.
Anxiety due to COVID-19 and impact on patients receiving chemotherapy in an inner-city minority population.
Authors: Tariq Muhammad Junaid , Almani Muhammad Usman , Sherazi Syed Ali Amir , Usman Muhammad , Arif Abdul Wahab , Yim Barbara , Gupta Shweta
Published: October 2020

108

Background: Cook County Health (CCH) is one of the largest public safety net hospitals in the United States. COVID-19 pandemic significantly affected patient care. Although hospitals took measures to keep patients safe, there is a general level of anxiety in patients about coming to the hospital. This study was undertaken to see the impact of COVID-19 and anxiety in patients actively receiving infusional therapy at our institution. Methods: All patients coming to our Infusion Center were offered an anonymous written questionnaire. The survey was given for 10 calendar days in June 2020 after Chicago moved into Phase-3 of re-opening that indicated significant control of COVID-19. The survey was offered in English, Spanish and Polish. It also included the GAD scale for anxiety assessment. Statistics were done using the t-test and z-test. Results: A total of 107 patients completed the survey. About 55% were women with 67% patients over 50 years old. Of the 90 people that specified their race, 44% were black and 42% were Hispanic, 9% whites, and 5% others. Overall 68% had high school or less level of education with Hispanics having significantly lower education than blacks. About 30% had testing for COVID-19 with 81% being negative. Treatment interruption occurred in 39% patients. Despite 75% finding our infusion center extremely or very safe for treatments 28% still felt moderately or severely anxious on the GAD scale. Blacks had similar levels of anxiety compared to Hispanics in March 2020 but no significant change over the months compared to Hispanics who had a significant reduction in anxiety over time. Blacks also had significantly higher rates of moderate to severe anxiety on the GAD scale (33%), while no Hispanic had severe anxiety and 18% had moderate anxiety. Despite a higher level of anxiety, blacks were less likely to have treatment interruptions compared to Hispanics (Table). Conclusions: Despite low levels of anxiety, Hispanics were more likely to have treatment interruptions during the COVID pandemic compared to blacks who had a higher level of anxiety but lower levels of treatment interruptions. The cause of this may be the level of education and awareness between the groups. However, overall there is still a significant amount of anxiety in the inner-city minority population regarding COVID-19. [Table: see text]
Incorporating of telementoring (Project ECHO) into practice: Efficacy of Point Of Service Testing-Breast Cancer (ePOST-BC).
Authors: Nye Lauren Elizabeth , O'Dea Anne , Sharma Priyanka , Nelson Eve-Lynn , McCarty Traci , Van Goethem Karla , Rush Eric , Nelson Katie , Krebill Hope , Boehmer Leigh , Klemp Jennifer R. ,   Masonic Cancer Alliance
Published: October 2020

113

Background: An estimated 327,630 breast cancers (BC) will be diagnosed in the US in 2020, and as high as 14% (45,868) may be related to a hereditary cancer syndrome. Testing eligible patients in clinical practice is hindered by multiple barriers including time, available workforce, cost, lack of organizational pathways, provider knowledge, as well as health disparities. To address some of these barriers, our team provided a telementoring and process improvement intervention for cancer care programs primarily serving rural patients across Kansas and Western Missouri using Project ECHO. We aimed to improve the process surrounding access to genetic education and testing for patients with BC. Methods: Rural and community cancer care teams were invited by the Masonic Cancer Alliance, the outreach arm of the University of Kansas Cancer Center, to participate in ePOST-BC. Five 1-hour Project ECHO sessions (community building, didactic, and case-based learning) covered topics included: 1) essential elements of HCS and genetic testing, 2) guidelines for genetic testing in BC 3) enhanced understanding of risk, screening, and management including precision medicine in HCS, and 4) overcoming barriers to genetic testing and management in low resource settings. Provider and practice readiness was assessed using the Organizational Readiness for Implementing Change survey. A REDCap database was used for registration, surveys and data collection. Results: Ten practices (6 = metro; 4 = rural) participated in the telementoring sessions and five practices participated in the optional process improvement intervention. Provider and clinic interest and participation was high and readiness was varied. Improvements were identified in knowledge, readiness, and patient access to genetic education and testing. The level of engagement in process improvement was impacted by an identified champion (either MD and/or APP), organizational commitment, and motivator (i.e., accreditation standard, business development). Conclusions: Rural and community oncology providers are interested and willing to engage in telementoring to improve implementation of point of service genetic education and testing. This improves provider knowledge, readiness and implementation of testing. Demonstrating a change in testing completion for eligible patients is difficult in a community setting without intensive data collection. Next steps include the incorporation of technology and standardized tools into practice to address provider and care team burden.
Multidisciplinary care for rural pancreatic cancer patients: Providers’ perspectives about patients’ challenges navigating between rural healthcare settings and high-volume centers.
Authors: Kurien Natasha , DePuccio Matthew , Sarna Angela , McAlearney Ann Scheck , Ejaz Aslam
Published: October 2020

116

Background: Multidisciplinary care from high-volume centers (HVCs) improves outcomes for patients with pancreatic cancer (PC). However, rural PC patients lack access to high-volume PC specialists, resulting in the need for them to travel to distant HVCs for specialized treatment. The barriers and challenges rural PC patients face when seeking care at distant HVCs is poorly understood. Methods: We conducted semi-structured interviews with PC specialists (medical, surgical, and radiation oncologists, n = 9) at a HVC (The Ohio State University) actively treating and co-managing rural PC patients with rural physicians. Using rigorous qualitative methods, two coders independently coded the interview transcripts to develop a thematic account of challenges rural PC patients encounter when receiving care at distant HVCs. Results: PC specialists commonly identified transportation as a major barrier they believed their rural PC patients experienced, and noted both the distance these patients needed to travel and difficulties patients reported in navigating major cities to receive care at HVCs. Similarly, providers commented that rural PC patients and their families reported having difficulty finding affordable lodging near HVCs sometimes resulting in the need for frequent and inconvenient back-and-forth travel between the HVC and the patient’s home. One interviewee stressed the importance of health literacy and the need for providers to improve physician-patient communication as well as provide resources to help rural PC patients better understand their condition and recommended treatment plan. PC specialists also indicated that some rural PC patients had expressed discomfort about contacting physicians outside their in-person clinic visits. They also reported that the possible duplication of services such as diagnostic imaging that could occur may result in increased financial stress for their patients. Conclusions: PC specialists noted several challenges they perceived their rural PC patients may face when navigating care between rural healthcare settings and HVCs. Notably, these challenges may both impact the delivery of high-quality multidisciplinary care and cause additional stress for rural PC patients. Future studies should examine how interventions (e.g., patient navigators, support groups, educational resources) aimed specifically at addressing barriers to multidisciplinary PC care for rural PC patients can be designed and implemented.
Factors associated with time to targeted therapy for patients with metastatic lung cancer with driver mutations.
Authors: Wang Suwei , Huang Hu , Scheufele Elisabeth , Arriaga Yull Edwin , Jackson Gretchen Purcell , Dankwa-Mullan Irene
Published: October 2020

120

Background: Targeted therapies are superior to chemotherapy in metastatic lung cancer with driver gene mutations. Delays in initiation of targeted therapies may result in faster symptom progression, decline in quality of life, and shortened survival. We examined factors associated with time to initiation of targeted therapy (TTT) in patients with metastatic lung cancer with selected driver mutations. Methods: In this retrospective cohort study, IBM MarketScan claims data was used to identify patients who had an initial diagnosis of metastatic lung cancer, defined as continuous insurance enrollment 12 months pre- to 6 months post-diagnosis, with tumor biomarker (i.e., EGFR, ALK, ROS1, BRAF V600E, NTRK)-directed targeted therapy performed within 6 months of the initial diagnosis, during the timeframe of 1/1/2013 to 12/31/2018. Trends in TTT were evaluated with Wilcoxon–Mann–Whitney. Quantile regression, a robust model that analyzed factors on different outcome-related quantiles, was used to identify associations among TTT and covariates including age, sex, comorbidity, insurance type, and US region. Results: Among 8977 patients identified with an initial diagnosis of metastatic lung cancer, 710 (7.9%) received targeted therapies within the 6-month timeframe, and 1040 (12%) had tumor biomarker testing performed. The overall median TTT was 21 days (IQR = 36 days). Median TTT decreased from 25 days in 2013 to 18 days in 2018 (p = 0.03). Factors associated with longer TTT (median, 50% quantile) were increasing age (p = 0.04), cardiovascular disease (“CVD”, p = 0.03), HIV (p = 0.04), and mild liver disease (p = 0.05). For the lower quantile ( < = 1 day, 5% quantile), female sex (p = 0.01), HIV (p = 0.04), and mild liver disease (p = 0.002) were associated with longer TTT. Having a PPO health plan extended TTT (p = 0.05) at the upper quantile (79 days, 90% quantile). Conclusions: Our study showed an encouraging 5-year trend of the median TTT decreasing by 28%. Numerous factors associated with longer TTT included increasing age, CVD, HIV, mild liver disease, female sex, and PPO plan. This study provides insights into patient-related factors associated with longer time to initiation of targeted therapies for patients with metastatic lung cancer with driver mutations. Additional research is needed to identify the reasons for longer TTT and to develop strategies to expedite delivery of optimal therapies.
Nonconscious nonverbal synchrony and patient and physician affect and rapport in cancer treatment discussions with black and white patients.
Authors: Hamel Lauren M. , Moulder Robert , Penner Louis , Albrecht Terrance Lynn , Boker Steven , Dougherty David W. , Eggly Susan
Published: October 2020

121

Background: Clinical communication is poorer with Black patients than with White patients, but most studies are limited to verbal communication. Nonverbal synchrony, the nonconscious coordination of movement between individuals, has been shown to reflect relationship quality. We investigated nonverbal synchrony’s association with patient and physician affect and rapport in cancer treatment discussions, and if those associations differed by patient race. Methods: We used motion detection software to measure overall synchrony and synchrony based on who is leading in the interaction (similar to leading in dancing) in video recordings of 68 Black patients and 163 White patients discussing treatment with their physicians. Naïve observers rated the interaction for six constructs: patient and physician positive and negative affect and patient-physician positive and negative rapport. We examined associations between patient race, nonverbal synchrony and the six constructs. Results: In interactions with Black patients, overall synchrony was positively associated with patients’ positive affect and positive patient-physician rapport and negatively associated with patients’ negative affect and negative patient-physician rapport. When the physician was leading, synchrony was positively associated with patients’ positive affect and positive patient-physician rapport and negatively associated with patients’ negative affect and negative patient-physician rapport. When the patient was leading, synchrony was positively associated with patients’ and physicians’ positive affect and positive patient-physician rapport, and negatively associated with patients’ negative affect and negative patient-physician rapport. In interactions with White patients, overall synchrony was positively associated with patient positive affect; when the physician was leading, synchrony was negatively associated with patient negative affect. Conclusions: This is the first study to use a dynamic, jointly-determined measure in patient-physician communication. Synchrony was related to patient and physician affect and rapport in interactions with Black patients, but only patient affect in interactions with White patients, suggesting nonverbal synchrony is particularly important in interactions with Black patients. Next, we will investigate associations with patient outcomes, such as satisfaction. Findings could contribute to physician training to enhance coordination and outcomes in oncology interactions.
The relationship between treatment intensity and characteristics of patients with early-stage breast cancer.
Authors: Franks Jeffrey , Caston Nicole , Williams Courtney , Azuero Andres , Aswani Monica S. , Gidwani Risha , Rocque Gabrielle Betty
Published: October 2020

125

Background: Clinical trials are used to generate standard-of-care, yet often do not reflect patient populations treated in real-world settings. Elderly patients or patients of color who are often underrepresented in trials, which may impact what types of treatments are prescribed. This study examines how patient characteristics are associated with treatment intensity in early stage breast cancer. Methods: This retrospective cross-sectional study included women with a stage I-III breast cancer from American Society of Clinical Oncology’s CancerLinQ database treated by chemotherapy from 2005-2019. Seven standard-of-care regimens were characterized by intensity. For patients with ER+/- HER2- breast cancer, low-intensity regimens were Taxol and Cyclophosphamide or Adriamycin and Cyclophosphamide; while Taxol, Adriamycin, and Cyclophosphamide was considered high intensity. For patients with HER2+ breast cancer, the low intensity regimen was Taxol and Herceptin; while Adriamycin and Cyclophosphamide followed by Taxol and Herceptin; Taxol, Carboplatin, and Herceptin; or Taxol, Carboplatin, Herceptin, and Pertuzumab were considered high intensity. A model estimating the likelihood of intensity was calculated using log-binomial regression, in order to produce relative risks. The models were adjusted for patient demographics and cancer stage. Results: Of 24,383 patients, 51% had ER+HER2-, 20% ER-HER2-, and 29% HER2+ breast cancer. Most patients were White (60%), age 40-69 (80%), had stage II breast cancer (39%), and received higher intensity treatment (65%). Adjusted for the other covariates, patient who were Black were more likely to receive high-intensity treatment than patients who were White (61% vs 58%; RR 1.05, 95%CI 1.02-1.06. Additionally, older adults were more likely to receive low-intensity treatment, with 42% of patients over 70 receiving low intensity treatment, and 29% of patients between the ages 40 and 69 received low intensity treatment (RR 1.5, 95% CI 1.44 -1.54). Conclusions: Differences in treatment intensity were observed for patients with differing demographic characteristics. Further research is needed to determine lack of representation in clinical trials impacts on prescribing patterns, regimen intensity, and survival.
Survey of challenges in access to diagnostics and treatment for neuroendocrine tumor (NET) patients (SCAN): Global disparities in quality healthcare for NETs.
Authors: Van Genechten Dirk , McDonnell Mark , Rodien-Louw Christine , Dureja Sugandha , Leyden Simone , Gellerman Elyse , Kolarova Teodora , Bouvier Catherine
Published: October 2020

127

Background: Neuroendocrine tumors (NETs) are rare and complex neoplasms with increasing incidence and prevalence worldwide. SCAN assessed global delivery of healthcare to NET patients. This analysis focused for the first time on healthcare quality evaluation by economic areas–Advanced Economies (AE) and Emerging and Developing Economies (EDE) classification used as per the International Monetary Fund. Methods: During Sept-Nov 2019, NET patients and healthcare professionals (HCPs) completed an online survey (available in 14 languages). Results: There were 2795 respondents from 68 countries across 6 continents. AE NET patients/carers were 88% [2076/2359], EDE were 12% [283/2359]. HCPs were evenly spread 51% AE [221/436] vs. 49% EDE [215/436]. The average evaluation score provided by NET patients to the healthcare received in the country they reside in for more than 6 months was 3.6 in AE, while one point lower 2.5 in EDE on a 5-point Likert scale (1-poor, 5-excellent). HCPs’ and NET patients’ scores were aligned: 3.9 as per AE HCPs (94% [208/221]), vs. 2.6 by EDE HCPs (68% [190/283]). The availability of top 3 most used NET treatments over the past 12 months was significantly lower in EDE: surgery in AE reached 85% (1765/2076) vs. EDE 71% (201/283) p<0.0001 [Chi-squared], somatostatin analogues - in AE 67% (1391/2076) vs. EDE 59% (167/283) p<0.0001, PRRT was 57% in AE countries (1183/2076), vs. EDE 33% (93/283) p<0.0001. Specialized services were of low usage globally and in deep disparity by economic areas, namely: NET specialist consultations (AE 55% [1143/2076] vs. EDE 40% [112/283] p<0.0001), multidisciplinary team care 34% (AE 34% [706/2076] vs. EDE 22% [63/283] p<0.0001), a clinical nurse specialized in NETs (AE 28% [589/2076] vs. EDE 7% [21/283] p<0.0001), psychological care (AE 13% [261/2076] vs. EDE 5% [15/283] p<0.0001), physical activities like yoga classes, trainings designed for cancer patients (AE 11% [220/2076] vs. EDE 3% [7/283] p<0.0001). State healthcare coverage was claimed by half of AE NET patients (51% [1064/2076]). National healthcare plan that covered NETs was mentioned by only a third of EDE NET patients (30% [85/283]. Conclusions: Availability of treatments and access to specialized NET healthcare is a global challenge and is in need of improvement. Additionally, the gap between AE and EDE in terms of treatments availability, support services usage, and state healthcare coverage is significant and manifests deep inequality.
Breaking down barriers: A strategic initiative to collect sexual orientation and gender identity information in the oncology patient population.
Authors: Rodgers Georgina T. , Poole Christa , Moore MaryKay , Baer Mikayla , Ferraro Christina , Wilks Mailey L , Stimpert Tyler
Published: October 2020

128

Background: The LGBT community is a diverse population that crosses race, ethnicity, socioeconomic status, age, and other factors. It is estimated that 8.8 million Americans are part of the community and the number is likely higher due to under reporting. The population is at increased risk for certain cancers, sexually transmitted infections, and is more likely to use alcohol, tobacco, drugs, and suffer from obesity, and behavioral health issues. LGBT patients face barriers to accessing care due to being under-insured, fear of discrimination and lack of access to culturally competent health care providers. Our cancer center embraced the need to collect sexual orientation/gender identity (SOGI) data as a means to identify and address the comprehensive needs of our patients and set a goal to provide an inclusive, patient-centered environment through education of our teams to build a trusted patient-provider relationship. Methods: We implemented a history section in the EHR to assist with data collection including, preferred name, sexual orientation, gender identity, legal sex, and sex assigned at birth. A project team was developed in 2019 to improve utilization of the existing tool and provide education to increase the comfort level of our caregivers. Our target groups consist of advance practice providers, RN care coordinators, social workers and physicians. Educational sessions occurred through multiple modes and “champions” were identified within target groups to keep the momentum going. Results: There was initial hesitation in utilization due to lack of understanding of the impact on patient care and lack of confidence in communication. Training was modified to include communication techniques and the why collection of SOGI data is important. Conclusions: A monthly report was developed to determine utilization of the SOGI fields and as of May 2020 have increased from 1.5% utilization to 17.5% utilization. A survey has been deployed to education attendees to determine pre and post education comfort levels in addressing the SOGI needs of patients and early data is showing a marked improvement in the comfort level of caregivers.
The use of validated geriatric assessment instruments among U.S. community oncologists.
Authors: Gajra Ajeet , Jeune-Smith Yolaine , Fortier Stephanie , Feinberg Bruce A.
Published: October 2020

129

Background: Older adults are disproportionately affected by cancer and may be under-treated due to concerns for adverse events or may suffer excessive toxicity from standard cancer treatments due to comorbidity and diminished physiologic reserve. A geriatric assessment (GA) can assist with risk stratification, inform treatment decisions and improve outcomes in older adults with cancer. This descriptive study aimed to assess knowledge, perceptions, and utilization of GA instruments among community oncologists/hematologists (cOH) with an overall goal to identify actionable disparities in the management of older adults with cancer. Methods: Questions about GA in the care of older adults with cancer were developed by two medical oncologists (AG and BAF) and presented to cOH with diverse geographic representation at live meetings and a preceding web-based survey between September 2019 and February 2020. Descriptive statistics were used to analyze the results. Results: Of the 349 participants, the response rate was 100%. The cut-off age used to define older adults by cOH was: ≥ 65 years (22%), ≥ 70 years (39%), and ≥75 (32%). The proportion of patients aged ≥ 70 years in their practices was reported as: 26-50% (48%) and > 50% (22%). Most cOH (60%) performed no formal GA to inform treatment decisions. The two most common reasons for not performing GA were: “Too cumbersome to incorporate into routine practice” (44%), and “Adds no value beyond the comprehensive history and physical exam” (36%). cOH awareness of validated GA/related instruments was: Mini-Mental State Exam (MMSE; 63%), Comprehensive GA (CGA; 37%) and CARG (Cancer and Aging Research Group) GA tool (22%); 22% were not aware of any validated instruments. Outside of clinical trials, the most frequently used validated GA instruments were: MMSE (54%), CGA (23%), CARG (12%), and CRASH (9%). For older adults with cancer, ECOG performance status and comorbidities were the two GA-related surrogate factors utilized in treatment decisions (88% and 73%, respectively). Conclusions: A majority of US community oncologists do not incorporate formal GA with validated instruments in the decision-making for older patients with cancer due to lack of time, resources and awareness. Education directed towards community oncologists may change perception and practice.
Opioid prescribing practices in adolescent and young adults with sarcomas.
Authors: Beauchemin Melissa , Raghunathan Rohit , Accordino Melissa Kate , Wright Jason Dennis , Kahn Justine , Hershman Dawn L.
Published: October 2020

136

Background: Adolescents and young adults (AYAs) with sarcoma undergo procedures that can result in acute and chronic pain. Adult cancer patients are at increased risk of chronic opioid use, and AYAs are vulnerable to misuse. However, opioid prescribing practices in AYAs with sarcoma are not known. We described opioid prescribing during active therapy and identify factors associated with continued opioid prescription post-treatment in AYAs with newly diagnosed sarcoma. Methods: Patients 10–26 years who were diagnosed with sarcoma between 2008–2016 were identified using IBM Marketscan database. Included subjects received anti-cancer therapy (chemotherapy, procedures, and/or radiation) within 30 days of diagnosis and were continuously enrolled in one insurance plan (commercial or Medicaid) >12-months both before diagnosis and after last therapy. Primary outcome was opioid use, defined as at least one opioid prescription during the 12 months following treatment completion. Covariates included age, sex, insurance, treatment type, mental health (MH) and substance use (SU) diagnoses. Results: We included 1,349 patients, 75% had commercial insurance, 21% had a previous MH, and 4% had previous SU diagnosis. 63% of subjects used opioids during treatment and 28% received at least 1 prescription in the year post-therapy. Medicaid insurance was associated with 60% higher likelihood of opioid use during treatment and those with prior use were three-times more likely to continue post- therapy. Conclusions: Opioid prescriptions in AYAs with sarcoma are common during treatment. A significant proportion of patients continue to receive opioids post-therapy, particularly those with a history of use pre-diagnosis. Medicaid insurance and MH disorder are also associated with continued use post-therapy. Further research is needed to establish safe and effective opioid prescribing practices in AYAs with sarcoma. [Table: see text]
Quantifying treatment preferences and their association with financial toxicity in women with breast cancer.
Authors: Williams Courtney , Gallagher Kathleen D. , Deehr Katie , Aswani Monica S. , Azuero Andres , Daniel Casey L. , Ford Eric W , Ingram Stacey A. , Balch Alan James , Rocque Gabrielle Betty
Published: October 2020

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Background: This study sought to understand treatment preferences and their association with financial toxicity in breast cancer patients served by Patient Advocate Foundation (PAF). Methods: This cross-sectional study used survey data from a nationwide sample of women with breast cancer who received assistance from PAF. Choice-based conjoint analysis elicited patient preferences and trade-offs. Latent class analysis segmented respondents into distinct preference groups. The Comprehensive Score for Financial Toxicity (COST) tool captured financial toxicity (range 0-44, lower scores indicate worse financial toxicity). Cramer’s V determined magnitude of relationships in bivariate associations. COST score differences by preference archetype was estimated by least square means and naïve 95% confidence intervals (CI) from adjusted generalized linear models. Results: Of 220 respondents (65% response rate), median age was 58 years (interquartile range [IQR] 49-66) and 60% had household incomes < $40,000. Most respondents were diagnosed with early stage cancer (91%), with 41% diagnosed within the past 2 years; 38% had recurred. Almost two-thirds (61%) were on active treatment. Treatment choice was most affected by preferences related to affordability and impact on activities of daily living (ADLs). Two distinct treatment preference archetypes emerged. The “Cost-Prioritizing Group” (75% of respondents) was most concerned about affordability, impact on ADLs, and burdening care partners. The “Functional Independence-Prioritizing Group” (25% of respondents) was most concerned about ability to work, physical side effects, and interference with important life events. Cost- vs. functional independence-prioritizing respondents were more often diagnosed with an early stage cancer (88% vs. 78%; V = .22), white (78% vs. 56%; V = .21), or privately insured (45% vs. 36%; V = .12). Functional independence- vs. cost-prioritizing respondents more often had household incomes < $40,000 (76% vs. 54%; V = .20), identified as Hispanic/Latino (20% vs. 9%; V = .15), or had Medicaid (15% vs. 7%; V = .12). COST scores were similar between archetypes in adjusted models (Cost-Prioritizing COST = 12, 95% CI 9-14; Functional Independence-Prioritizing COST = 11, 95% CI 9-13). Conclusions: Patients with breast cancer prioritized affordability or maintaining functional independence when making treatment decisions. Because of this variability, preference evaluation during treatment decision-making could optimize patients’ treatment experiences.
Caregiver burden: Empowering caregivers with shared decision-making strategies and skills to improve patient quality of life and outcomes.
Authors: Raymond Martha Ann , Simonetta Margaret-Ann
Published: October 2020

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Background: Data from the National Cancer Institute’s Surveillance, Epidemiology & End Results (SEER 2016) program estimates there are 15.5 million cancer survivors in the United States who rely on cancer caregivers every day. Caregivers play an essential role throughout the care continuum greatly impacting a patient’s quality of survivorship. Methods: August 2019–March 2020 the Raymond Foundation hosted nationwide caregiver focus groups and an online survey. Primary goals were reaching caregivers and the patients they serve in rural, urban, and community oncology settings to gain perspective from diverse populations. Focus groups were held in person and online via video conferencing. Results: 1012 caregivers and the patients they care for (41% male, 59% female) participated in our focus groups and online survey: 92% reported a lack of educational resources necessary to participate in shared decision making regarding treatment protocol; 90% reported they lacked communication strategies required to effectively communicate with their healthcare team; 87% reported they would like to learn more about clinical trials but did not know where to start; 85% reported they did not feel comfortable reporting treatment adverse effects; 94% reported working toward a patient-centered, advocate based care approach would lead to enhanced quality of life and improved outcomes. Conclusions: Cancer caregivers and the patients they assist understand the importance of shared decision-making and patient centered care. Based on our focus groups and survey findings, our call to action includes developing the Cancer Caregiver Advocacy Plan. This unique educational resource will provide key information to address educational gaps and empower caregivers to become informed healthcare advocates. The Cancer Caregiver Advocacy Plan will be a companion resource to the Raymond Foundation’s 2018 Cancer Caregiver Action Plan as we continue to expand our education and outreach to minimize cancer burdens for patients and caregivers.
The impact of a cancer diagnosis on worker productivity: Results from a survey of cancer patients and caregivers.
Authors: May Suepattra Grace , Chiu Kevin , MacEwan Joanna P. , Bognar Katalin , Peneva Desi , Zhao Lauren , Yong Candice , Amin Suvina , Batt Katharine , Bolinder Bjorn , Baumgardner James
Published: October 2020

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Background: Traditional approaches to capturing health-related productivity loss--e.g. the human capital method--focus only on the foregone wages of affected patients, overlooking the losses caregivers can incur. Thus, the value of lost productivity is often underestimated. This study comprehensively estimates and describes work-related productivity losses due to a cancer diagnosis among working-age (18-65) breast cancer (BC) and non-small cell lung cancer (NSCLC) patients and their unpaid caregivers in the United States. Methods: A cross-sectional survey of BC and NSCLC patients and caregivers measured loss associated with time absent from work (absenteeism) and reduced effectiveness (presenteeism). Respondents reported pre- and post-cancer diagnosis income, hours worked, and time to complete tasks. Exploratory multivariable analyses examined correlations between respondents’ clinical and demographic characteristics—including industry of employment—and post-diagnosis productivity. Results: Of 204 patients (104 BC, 100 NSCLC) and 200 caregivers (100 BC, 100 NSCLC) who completed the survey, 319 participants (162 BC, 157 NSCLC) working ≥40 weeks/year pre-diagnosis were included in the analysis. Over a third of the NSCLC (33%) and BC (43%) patients left the workforce post-diagnosis, whereas 15% of caregivers left. Estimated mean annual productivity loss equaled $125,975 ($50,328 using traditional method) for NSCLC patients and $120,404 ($37,445 using traditional method) for BC. For caregivers, estimated mean annual productivity loss was $97,062 ($39,751 using traditional method) for NSCLC and $123,669 ($33,410 using traditional method) for BC. Exploratory analyses found that greater patient age and later stage at diagnosis were correlated with greater absenteeism. Conclusions: Although patients typically experience greater absenteeism, productivity loss incurred by caregivers is also substantial. Our results underscore the importance of holistic approaches to understanding the broad impact of cancer on both patients and their caregivers.
Missed work, lost income, and job loss in survivors of colorectal cancer and their partners: A dyadic study.
Authors: Veenstra Christine M , Abrahamse Paul , Morris Arden M. , Hawley Sarah T.
Published: October 2020

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Background: Many survivors of colorectal cancer face long-term job loss stemming from their diagnosis. However, little is known about employment outcomes among their partners and virtually nothing is known about employment impacts among survivor-partner dyads. Methods: In 2019-20 we surveyed 1150 patients who, in 2014-18, underwent resection of Stage III colorectal cancer and were seen at a community oncology practice, academic cancer center, or reported to Georgia SEER (51% RR). Patients gave a separate survey to their partner. 299 partners (73% RR) completed surveys. Patients and partners were asked about employment consequences of the patient’s cancer. Availability of job support benefits and prevalence of adverse employment outcomes were described among partners. Descriptive statistics were generated to identify trends in job loss within dyads. Results: Among partners, 56% were <age 65, 63% female, 86% white, 27% had < high school education. 61% were employed at time of patient’s diagnosis. Among these, 15% had no job support benefits. 33% had paid sick leave, 47% had flexible work schedule, 28% had unpaid time off. Due to the patient’s cancer, 43% missed 7-30 days work and 13% missed >1 month. Due to the patient’s cancer, 18% lost $2000-$10,000 in income and 11% lost >$10,000. 27% were no longer working at the time of survey. In 47% of dyads, both patient and partner were working before patient’s diagnosis. Among those, in 29% only 1 member of dyad was still working at time of survey and in 11% neither member of dyad was still working. In 15% of dyads, only the partner was working before patient’s diagnosis. Among those, in 50% the partner was no longer working at time of survey. In 16% of dyads, only the patient was working before diagnosis. Among those, in 48% the patient was no longer working at time of survey. Job loss in dyads was associated with older age, lower annual income, and lack of flexible work schedule. Conclusions: Missed work and loss of income are common among partners of patients with colorectal cancer. Job loss affects nearly half of dyads in the survivorship period. Employer accommodations such as flexible scheduling may help mitigate job loss among survivors and their partners. [Table: see text]