bluuebunny/crossref_metadata_2025_split huggingface dataset:
Size and influence of the decision support networks of women newly diagnosed with breast cancer.
Authors: Wallner Lauren P. , Li Yun , McLeod Chandler , Hamilton Ann S , Ward Kevin C. , Veenstra Christine Marie , An Lawrence C. , Janz Nancy K. , Katz Steven J. , Hawley Sarah T. 
Published: September 2018

e18012 Background: Little is known about the size and characteristics of informal decision support networks of women diagnosed with breast cancer and whether involvement of informal decision supporters (DSP) influences breast cancer treatment decisions. Methods: A population-based sample of newly diagnosed breast cancer patients reported to the Georgia and Los Angeles SEER registries in 2014-15 were surveyed approximately 6 months after diagnosis (N = 2,502, 68% response rate). Network size was estimated by asking women to list up to 3 of the most important DSPs who helped them with locoregional therapy decisions. For each individual DSP listed, respondents reported how important each DSP’s opinion was in treatment decision making, and how satisfied they were with their involvement (5 pt. scales, “not at all” to “very”). Decision deliberation was measured using 5-items assessing degree patients thought through the decision, with higher scores reflecting more deliberative treatment decisions. We compared network size (0-3 or more) across patient-level characteristics and estimated the association between network size and deliberation using multivariable linear regression. Results: Of the 2,502 women in this analysis, 51% reported having 3 or more DSPs, 20% reported 2, 18% reported 1, and 11% reported not having any DSPs. Married/partnered women, those younger than 45 years old, and black women were all more likely to report larger networks (all p < 0.001). Partnered women most often reported their partner as their main DSP (37.9%), whereas not partnered/unmarried women most often reported children (38.4%). The majority of women were highly satisfied with their DSP being involved in their decisions (76.5%) and 68.6% felt their DSP was very important in their decision making. Larger support networks were associated with more deliberative surgical treatment decision-making (p < 0.001). Conclusions: Most women engaged multiple DSPs in their treatment decision making, including spouses, children, and friends. Involving more DSPs was associated with more deliberative treatment decisions. Future initiatives to improve breast cancer treatment decision making should acknowledge and engage informal DSPs.
Prescription trends of everolimus in non-elderly cancer patients with private insurance in the United States.
Authors: Xing Yan , Xu Ying , Meric-Bernstam Funda , Chang Jenny Chee Ning , Shih Ya-Chen T. 
Published: September 2018

e18016 Background: The use of targeted oral cancer medications has increased significantly since 2001. Everolimus, an mTOR inhibitor was first approved for cancer treatment by FDA as second line for patients with advanced renal cancer. Subsequently it has been approved for advanced pancreatic neuroendocrine tumor (NET) in 2011 and breast cancer in 2012 respectively. Off-label use is common in oncology practice. The objective of this study is to assess prescription trends, especially off-label use of everolimus, among non-elderly cancer patients with private insurance in the United States from 2009 to 2014. Methods: Data from the MarketScan database were analyzed. Between 2009 to 2014, 4,728 cancer patients with at least one everolimus prescription were included in the analyses. The diagnosis which incurred the most recently to the initial everolimus use in each calendar year was recorded. Off-label use was defined as using everolimus by all of the cancer types except of renal cancer in 2009-2014, NET in 2011-2014 and breast cancer in 2012-2014. Results: The number of patients received everolimus has increased significantly from 243 in 2009 to 1,194 in 2014. The most common diagnoses associated with everolimus use were breast cancer (42%), followed by renal cancer (24%), and NET (7%). Off-label use of everolimus increased from 29% in 2009 to 47% in 2011 then decreased to 23% in 2014. The 3 most common diagnoses associated with off-label use of everolimus were secondary malignancies (30.7%), breast cancer (10.4%) and liver cancer (5%) in 2009-2011, compared to secondary malignancies (47.3%), brain cancer (4.2%) and lung cancer (3.9%) in 2012-2014. The off-label use in female has decreased significantly from 32% in 2009 to 19% in 2014 (p = 0.03). There was no statistical difference in off-label use of everolimus by geographic region. Conclusions: Analyses of MarketScan data suggest off-label use of everolimus is common among US cancer patients, especially in lung, liver and brain cancer and secondary malignancies after the approved indication was expanded to breast cancer in 2012. Further research of the factors associated with off-label use of everolimus and its economic implication is needed.
Attendance at National Cancer Institute Cancer Centers (NCI-CC) by older adults with myeloma.
Authors: Wildes Tanya Marya , Fiala Mark A 
Published: September 2018

e18020 Background: Older adults with myeloma (MM) have poorer survival than younger patients. NCI-CC attendance is associated with superior outcomes in many cancers. Studies show that older adults are reluctant to be treated in university settings and are more likely to be treated in the community setting. We aimed to define the factors associated with NCI-CC attendance in older adults with mm from a nationally representative sample and its association with survival. Methods: We identified all mm cases in the SEER-Medicare linked database from 2000-2011. Included cases were enrolled in Medicare Part A and B > 1 year prior to diagnosis; we excluded those enrolled at age < 65. Any center designated a NCI-clinical or -comprehensive center in 2002, 2005, or 2010 was considered an NCI-CC; attendance was defined as ≥2 separate claims from an NCI-CC in the 1-year after mm diagnosis. CM were calculated using the Charlson Comorbidity (CM) Index (CCI). Poor performance status indicators (PSi) were coded as present or absent. Logistic regression was performed to determine if age was associated with NCI-CC attendance. Cox regression was determined the association of NCI-CC attendance with survival. Results: 21,843 cases were included; median age was 77 years. Overall 10.6% of the cohort attended an NCI-CC. Increasing age was associated with decreasing NCI-CC attendance rates: 18.6% (age 65-69), 13.9% (age 70-74), 9.0% (age 75-79) and 6.0% (age ≥80). After controlling for race, gender, socioeconomic status, and urban/rural regions, increasing age, poor PSi and CCI were each associated with lower odds of NCI-CC attendance [Age: OR 0.925/year (95% CI 0.92-0.93); Poor PSi: OR 0.87 (CI 0.76-1.00); CM: 0.94/CCI point (CI 0.90-0.97)]. After controlling for sociodemographics, PS and CCI, NCI-CC attendance was associated with lower mortality [HR 0.74 (95% CI 0.70-0.78)]. Conclusions: With increasing age, poor PS indicators and CM, pts are less likely to attend an NCI-CC. After controlling for other prognostic factors, attendance at an NCI-CC was associated with lower mortality. Data from trials in older mm pts from NCI-CC or other tertiary care centers must be viewed with caveat that pts tend to have better PS and fewer CM.
Value of innovation in oncology: The position of European cancer patients on access to innovative treatments.
Authors: Florindi Francesco , De Lorenzo Francesco , Apostolidis Kathi , Pelouchova Jana , Winterbottom Andrew , Chrostowski Szymon , Cimpoeru Dan , Bolanos Natacha , Rek Anna , Manneh-Vangramberen Isabelle , Bolhuis Jiska , Makaroff Lydia 
Published: September 2018

e18021 Background: The paper presents the position of the European Cancer Patient Coalition (ECPC), in partnership with Interel, on the value of innovation in oncology today, focusing on issues that would benefit most from the direct involvement of patients.The objective of the paper is to present key factors affecting access to innovation in oncology in Europe and to propose key recommendations on how to improve equity in access and to actively involve patients in decision-making. Methods: The document was produced under the supervision of the ECPC Board of Directors, and the contribution of the ECPC General Assembly, which was consulted in June 2016 during the Annual General Meeting.The paper is based also on a systemic literature review. Results: The paper analyses the main systems barriers to access to innovation, which affect all European cancer patients: low level fo health expenditure on cancer; high cost of innovative treatments; complex regulatory and reimbursement pathways; lack of enabling environments; limited patient involvement in decision making. The paper goes on identifying 40 key policy recommendations in 10 pivotal areas (see Table). Conclusions: Innovative healthcare technologies, strategies, and services offer the potential to improve the lives of many people living with cancer. Ensuring that effective innovations are accessible and affordable to all patients is a challenge facing all cancer stakeholders. The successful development and implementation of new cancer care modalities stems from putting the needs of patients at the centre of the innovation process. Patients are the ultimate beneficiaries and users of cancer diagnosis, treatment, and care. They have unique knowledge, perspectives, and experiences that improves and encourages innovation in oncology. Optimal innovation can only be obtained by understand the diverse needs and preferences of cancer patients, and integrating patient-centred approaches into the regulatory and healthcare system. [Table: see text]
Are patients with high-risk polycythemia vera (PV) receiving cytoreductive medications? A retrospective analysis of real-world data.
Authors: Paranagama Dilan , Yu Jingbo , Colucci Philomena , Evans Kristin , Bonafede Machaon , Parasuraman Shreekant 
Published: September 2018

e18031 Background: Risk-adapted therapy in PV is aimed at preventing thrombotic events (TE). Under current treatment recommendations (including European LeukemiaNet), high-risk patients (age ≥ 60 y and/or history of TE) should be managed with cytoreductive medications in addition to phlebotomy and low-dose aspirin. The objective of this study was to describe cytoreductive medication usage in patients with high-risk PV. Methods: Retrospective claims from the Truven Health MarketScan Database were analyzed. Inclusion criteria were ≥ 2 non-diagnostic claims for PV >30 days apart, age ≥ 18 y, continuous enrollment during pre-index (1/1/2012–12/31/2012), and continuous enrollment through or death during the study period (1/1/2013–12/31/2014). Patients with claims for myelodysplastic syndrome, myelofibrosis, acute myelogenous leukemia, or secondary polycythemia were excluded. Descriptive statistics were used. Results: The study included 2856 patients. Mean (SD) age was 62.5 (13.5) y, 65.9% of patients were male, and 63.8% were high-risk. Comorbid conditions of interest were reported more frequently in high-risk patients than low-risk patients: hypertension (65.0% vs 43.1%), diabetes (21.7% vs 10.1%), and congestive heart failure (6.6% vs 0.6%). In low- and high-risk patients, the most commonly used cytoreductive medications were hydroxyurea (93.6%), anagrelide (7.6%), and interferon (2.4%). Low-risk patients received cytoreductive medications less often than high-risk patients (Table). However, only 42% of the high-risk patients received treatment with a cytoreductive medication by the end of the study. Conclusions: Despite higher cardiovascular risk and treatment recommendations, less than half of the high-risk PV patients received cytoreductive medications. Furthermore, less than a third of younger patients with a prior TE received cytoreductive medications. [Table: see text]
Understanding of important chemotherapy terminology by underserved populations.
Authors: Pentz Rebecca D. , Jacson Candice A , Gillespy Kristen , Lohani Minisha , Dixon Margie D 
Published: September 2018

e18046 Background: Terminology used to describe chemotherapy can be difficult to understand, hindering shared decision making. Using a word bank of 42 misunderstood words we created previously (2016 ASCO abstract 164532), we identified the most misunderstood words and created 6 videos to describe six of them. Methods: An expert panel - three oncologists, two health literacy experts, an education specialist and a social worker - chose 20 words from the word bank to test. The number 20 was chosen to avoid participant fatigue. The 20 words were the 17 most frequently chosen by patients as hard to understand and 3 deemed crucial to understand by providers (curative, palliative, risk of infection) (Table). These words were tested for understanding with 50 underserved oncology patients, who were asked to provide definitions. Frequency of misunderstanding was calculated. Wrong definitions were tabulated to guide the expert panel in writing the script for the videos. Videos were created using VideoScribe software. Results: Eleven words were misunderstood by more than half of the participants (Table). After studying the wrong definitions, the expert panel provided definitions for six words (cancer, chemotherapy, curative, palliative, risk of infection, blood count) to create videos for a pilot study of the effectiveness of the videos. The video for ‘cancer’ can be found here https://www.youtube.com/watch?v=losI4fvESuU . Conclusions: Key words used to describe chemotherapy are not understood by patients. A simple intervention like a short video may aid in understanding. [Table: see text]
Last year of life of adolescent young adult (AYA) oncology patients: Inpatient utilization.
Authors: Johnston Emily E. , Alvarez Elysia Marie , Saynina Olga , Sanders Lee , Bhatia Smita , Chamberlain Lisa J 
Published: September 2018

e18047 Background: Studies of AYA oncology patients’ end-of-life care utilization are critical as cancer is the leading cause of non-accidental AYA death and end-of-life care contributes significantly to healthcare expenditures. We sought to determine the quantity of and disparities in inpatient utilization in the last year of life of AYAs with cancer. Methods: Using the California Office of Statewide Health Planning and Development administrative database linked to death certificates, we performed a retrospective population-based analysis of cancer patients aged 15-39 who died between 2000 and 2011. We determined the number of hospital days and inpatient costs for each patient in their last year of life. We determined clinical and socio-demographic factors associated with high inpatient utilization. We also evaluated admission patterns (frequency and location) as death approached. Results: The 12,883 patients were admitted an average of 40 days in their last year of life, resulting in $149,307 per patient in inpatient costs [non last year of life AYA oncology: 11.6 days (p < 0.01) and $43,423 (p < 0.01)]. As death approached, admission rates and the percent of admissions at non-specialty centers increased. Five percent of patients used 20% of bed-days in the last year (high-utilizers). Sociodemographic and clinical factors associated with high utilization included younger age (15-21y: OR = 2.85; 95% CI, 2.3-3.6, 22-30y: OR = 1.81; 95% CI, 1.5-2.2, reference: 31-39y), Hispanic ethnicity (OR = 1.51; 95% CI, 1.2-1.9, reference: Non-Hispanic White), non-HMO insurance (private: OR = 1.48; 95% CI, 1.1-2.0, public/self pay: OR = 1.84; 95% CI 1.3-2.5), and hematologic malignancies (OR = 3.11; 95% CI 2.6-3.8, reference: solid tumors). Conclusions: AYA oncology decedents spent 40 days in the hospital in their last year of life, with average costs approaching $150,000 per patient. Subgroup with high utilization had distinct sociodemographic and clinical characteristics and non-specialty center admissions increased as death approached. This demonstrates the need for availability of palliative care at non-specialty centers. Whether these disparities and admission patterns represent goal-concurrent care needs to be examined.
A multidimensional view of racial differences in access to prostate cancer care.
Authors: Pollack Craig Evan , Armstrong Katrina , Mitra Nandita , Chen Xinwei , Ward Katelyn R , Radhakrishnan Archana , Ross Michelle Elana , Bekelman Justin E. , Branas Charles C , Rhodes Karin , Grande David 
Published: September 2018

e18048 Background: Racial differences in prostate cancer treatment and outcomes are widespread and poorly understood. We sought to determine whether access to care, measured across multiple dimensions, contribute to racial differences in prostate cancer. Methods: The Philadelphia Area Prostate Cancer Access Study (P2 Access) included 2374 men diagnosed with localized prostate cancer from 2012 to 2014. Patient survey data was used to determine experiences of accessing prostate cancer care (response rate 51.1%). An audit survey using simulated patient calls was used to determine appointment availability and wait times at 151 urology practices. Patient and practice addresses were geocoded to construct distance measures. We used multivariable logistic regression models to determine the association between five different domains of access—availability, accessibility, accommodation, affordability, and acceptability—and receipt of definitive treatment with radical prostatectomy or radiation, satisfaction with care, and doctor-patient communication. Results: There were 1907 non-Hispanic white and 394 black men in our cohort, the majority (71%) with stage 1 disease. Overall, 85% of men received definitive treatment with no differences by race. None of the access domains were significantly associated with definitive treatment overall or with radical prostatectomy in adjusted models. Black men were less likely to report good doctor-patient communication (60% vs 71%, p < 0.001) and high satisfaction with their care (69% vs 81%, p < 0.001). Communication ratings remained significantly lower among black men compared to white men in adjusted models (odds ratio = 1.49, 95% Confidence Interval 1.03, 2.16). Each domain of access was significantly associated with lower satisfaction with care and worse communication; however, differences in access did not mediate racial disparities for these measures. Conclusions: This study presents the first comprehensive assessment of access to prostate cancer care, showing that while access was related to overall satisfaction and better doctor-patient communication, it did not appear to explain racial differences in these measures of cancer care.
A closer look at some National Clinical Trials Network sites and their recruitment ability.
Authors: Makosiej Frank , Lizaso Montessa 
Published: September 2018

e18055 Background: Targeted therapies have prompted clinical trials centers to screen large numbers of patients of a particular tumor type and to test further to identify those with molecular targets that meet the criteria of the study protocol. In March of 2014, the NCI converted Cooperative Groups into National Cancer Trials Network (NCTN) to better address the scientific needs and challenges these more innovative treatments introduce. The Alliance for Clinical Trials in Oncology is one of the five US Oncology Network groups, and Lead Academic Participating Sites (LAPS) are academic institutions recognized to be able to enroll high numbers of patients onto NCTN trials. Some LAPS sites were recognized to overlap into the Alliance Network as well. An analysis of their recruitment rates and comparison to non-LAPS or non-Alliance sites were reviewed. Methods: Between the years of 2011 to 2016, Covance Xcellerate captured over 2,688 unique Investigators participating in cancer trials in the United States. Seven hundred, seventy-four, cancer trials were involved. Nine hundred, forty-eight unique sites were identified. Results: On a site view, those institutions that were part of the Alliance Network enrolled patients at a median rate of 0.24 pts/site/mo, while LAPS sites recruited at a faster median enrollment rate of 0.33 pts/site/mo. Sites that overlapped within both networks enrolled at a rate of 0.30 pts/site/mo, and sites that were not members of either the Alliance or LAPS network enrolled at a rate of 0.23 pts/site/mo. When analysis of recruitment rate was narrowed further to look at individual investigators that were members of these networks or not, investigators representing from both Alliance and LAPS, their median enrollment rate was slightly higher at 0.33 pts/site/mo when compared to those investigators that were only members of LAPS network. Also, those sites that part of Alliance and LAPS recruited the most patients into studies. Conclusions: Sites that are members of networks such as the Alliance or LAPS, can recruit more patients into a clinical trial at a faster rate than sites that were not participants of the Alliance or LAPS.
Evaluation of online search (OS) by patients with cancer in a private (Pr) and a public (Pu) institution.
Authors: Espinoza Diego , Pastrana Victor , Menocal Florencia , Correa Zeballos Gustavo , Arroyo Elisa , Segovia Rodrigo , Arcuri Jorge Raul , Zarba Juan Jose 
Published: September 2018

e18059 Background: Information technologies, such as Internet, have an impact on the field of medicine. Cancer diagnosis leads patients (pts) to inform about their illness. Objectives: To determine the percentage and motivation of pts who browse online about their illness. The most frequent cause to avoid OS according to the institution. Whether OS had an influence on the therapeutic decision. Whether the educational level (EL) and Age Cohort (AC) are related to the frequency of OS. Methods: Descriptive, cross-sectional study. The data was collected from anonymous surveys to pts who made a consult from March to April, 2015 in Pu; and from February to April, 2016 in Pr Results: 360 surveys were made. 180 in Pr, and 180 in Pu. Gender: 55% female. AC: 4% 18-31 y; 13% 32-45 y; 38% 46-59 y; and 45% of 60 y or older. EL: Elementary 43%; High school 42%; College/University 15%. OS: Pu: 17%. Pr: 32%. Reasons to avoid OS: The info provided by the doctor is enough Pr: 24% Pu: 16%; Pr 18.69%, Pu 1.35% avoid further info; Pr 40%, PuI 35% ignore how to use the Internet; Pr 17%, Pu 47% lack Internet access. Reasons for OS: the doctor does not provide enough info Pr 39% Pu 14%; to add further info: Pr 61% Pu 86%. Considers trustworthy info: Always Pr 13% PuI 31%; Sometimes Pr 81% PuI 66% Never Pr 6% PuI 6%.Useful information to make decisions about their treatment: Pr 83% Pu 81% EL/OS:p = 0.001. AT/OS: p = 0.001. Institution/OS:p = 0.001. Conclusions: More than 75% of pts did not consult online mainly due to lack of internet access. 20% considers that the information is always trustworthy, in 80% was useful for the decision making of their treatment. A significant relation among EL, AC and the institution was found, thus showing that the younger the age –and the higher the academic training-, the more OS is made by oncology pts. That is the reason why we consider that raising awareness about these factors in order to properly guide pts into an adequate and trustworthy OS could improve the process of decision making.