bluuebunny/crossref_metadata_2025_split huggingface dataset:
Patient (pt) interview–based content validation of the Myelofibrosis Symptom Assessment Form version 4.0 (MFSAF v4.0).
Authors: Cardellino Anna , Zhang Shiyuan , Phiri Kelesitse , Gelhorn Heather , Cutts Katelyn 
Published: June 2024

e23106 Background: Pts with myelofibrosis (MF) often experience debilitating symptoms that negatively impact health-related quality of life and functioning. The MFSAF v4.0 is a 7-item questionnaire assessing the burden of MF symptoms, including fatigue, night sweats, pruritus, abdominal discomfort, pain under left ribs, early satiety, and bone pain. Each item is evaluated on an 11-point numeric rating scale (NRS) from 0 (absent) to 10 (worst imaginable). We sought to evaluate the content validity of the MFSAF v4.0 in Janus kinase inhibitor–experienced pts with MF. Methods: Qualitative interviews were conducted remotely by trained interviewers with 20 Janus kinase inhibitor–experienced and symptomatic (MFSAF Total Symptom Score [TSS] ≥10) pts with MF from the US (n = 5) and UK, Germany, Italy, Poland, and Spain (n = 3 each). The interview began with a concept elicitation section to allow spontaneous reporting of important concepts prior to content validation of the MFSAF v4.0 items and NRS as relevant, important, and understandable to pts. Results: Mean pt age was 59.4 years; 50% were male, 55% were diagnosed within the past year, 95% were on any treatment for MF, and 75% were anemic. On average, pts had 2.1 transfusions within the past 3 mo. Mean MFSAF v4.0 TSS was 28.6.The top spontaneously endorsed symptoms were tired (70%), bone/muscle pain (70%), fatigue (55%), night sweats (45%), and pruritis (45%), many of which are also items in the MFSAF v4.0. An additional 18 symptoms were spontaneously mentioned by pts prior to completion of the MFSAF v4.0. Many of these other symptoms were endorsed by ≤10% of pts (1 or 2 pts each), and 90% of pts felt that the measure represented their experience and did not recommend inclusion of additional symptoms after reviewing the measure. Overall, pts showed a clear understanding of the MFSAF v4.0 (Table). No more than 3 pts (15%) mentioned that a given item was not relevant to their individual experience. Pts consistently felt that it was easy to select an answer on the response scale and were able to differentiate response options. When describing meaningful change in terms of NRS, pts most often suggested that an improvement of 2 to 4 points would be meaningful. Conclusions: Based on the findings from this study, the MFSAF v4.0 is a content-valid measure for pts with MF and captures the most important concepts. All items are comprehensible and relevant, with the NRS endorsed as an appropriate response scale. [Table: see text]
Improving the multiple myeloma and clinical trial awareness among Los Angeles County adults.
Authors: Equils Ozlem , Bakaj Amonda , Bakaj Angela , Gonzalez Yenis , Hernandez Linda , Cornejo Jacqueline , Salazar Jimena , Alonso Janneth , Morales Abigail 
Published: June 2024

e23108 Background: Multiple Myeloma (MM) is the second most common bone marrow cancer in the United States. The prominent risk factors include Black race and male gender. The purpose of this study was to assess the awareness of MM and clinical trial access among a diverse community of people in the Los Angeles County, and to educate the participants. Methods: An IRB-approved Qualtrics survey was administered electronically to a group of 132 participants aged 18 years and older in Los Angeles County between May 3rd and July 15th of 2023. The survey investigated participants’ knowledge on MM risk factors and symptoms, as well as their understanding and attitudes towards resource and clinical trial access. Information on participant demographics was also collected. Statistical tests including chi-square analysis, descriptive statistics, filtering and sub-setting, and correlation analysis, were all utilized and conducted using the software, R-Studio. MiOra Health Educators provided face-to-face education on MM and clinical trials using CDC-based flyers. Results: Out of 132 respondents, 40 (30.3%) were male, 92 (69.7%) were Latinx, and 78 (59.0%) were a first-generation resident of the United States. 71 out of 92 females (77.4%) and 9 out of the 40 males (22.6%) reported attending their annual wellness visit. Prior to the educational intervention, only 6 out of the 132 participants (4.5%) reported being very knowledgeable about cancer and the way it works. Interestingly, 87 (65.9%) reported being aware of the familial risk of MM. 77 (58.1%) of the respondents reported not knowing what a clinical trial is and clinical trial awareness was found to be the main factor predicting the willingness to participate in one (p < 0.01). 108 (81.8%) of the respondents reported that hearing from past clinical trial participants may be useful, but 111 (84.1%) reported that healthcare professionals (including primary care doctors, nurses, medical practitioners, and oncologists) would be the most appropriate educators on clinical trials. Following the health education intervention, 89 (66.9%) of the respondents reported feeling more knowledgeable about clinical trials, and 93 (70.8%) reported feeling more willing to participate in one. Additionally, 87 (65.9%) reported feeling more knowledgeable about MM risk factors, symptoms, screening, and treatment. Conclusions: Although the risk for MM is higher among males, this group appears to significantly less likely than females to comply with their annual wellness visit, signalling a gender disparity in primary care resource utilization. Knowledge on clinical trials appears to influence participation and although primary care providers are the most trusted resources, community health educators and exposure to past clinical trial participants may help close these gaps in clinical trials.
Impact of COVID-19 on post-treatment breast cancer surveillance and outcomes.
Authors: Hahn Erin Elizabeth , Eng Sarah , Chen Aiyu , Haupt Eric C. , Goodall Shannon , Munoz-Plaza Corrine E. , Gould Michael K. , Nguyen Huong Q , Ganz Patricia A. , Shen Ernest 
Published: June 2024

e23114 Background: Little is known about the impact of the COVID-19 pandemic on post-treatment surveillance for patients diagnosed with breast cancer. Disruptions in recommended cancer surveillance screening to detect progression or recurrence could impact long-term outcomes. In this study, we compared use of recommended surveillance screening in pre- and post-COVID time periods for patients diagnosed with breast cancer within a large integrated healthcare system, Kaiser Permanente Southern California (KPSC). We also evaluated detection of breast cancer recurrence or progression. Methods: We identified patients in post-treatment surveillance for early-stage breast cancer in two time periods, pre-COVID and post-COVID. Pre-COVID included patients diagnosed 01/01/2015-12/31/2016 with 2 years of follow-up time through 12/31/2019; post-COVID included patients diagnosed 06/01/2018-05/31/2020 with 2 years of follow-up time through 05/31/2023. Eligible patients were diagnosed with stage 0-II breast cancer and received curative surgery. We excluded patients with multiple cancers, and those who disenrolled from the health plan, died, or were referred to hospice within the 2-year surveillance period. Based on NCCN guidelines, we identified the proportion of patients who underwent annual breast imaging during each year of the surveillance period. A log Poisson model examined the association between imaging and COVID period; covariates included patient age, race/ethnicity, cancer stage, treatment, and comorbidity score. We identified cancer recurrence or progression using diagnostic, treatment, and imaging codes. Results: We identified 3,369 pre-COVID patients and 3,925 post-COVID patients; groups were similar (Table 1). A significantly smaller proportion of post-COVID patients received surveillance screening (first surveillance year: 85% in the pre-COVID group vs. 77% post-COVID, p = 0.001; second year: 83% vs. 80%, p = 0.01). Patients were 4% less likely to receive imaging post-COVID compared to pre-COVID (adjusted OR 0.96, 95% CI: 0.94-0.98). Similar percentages of patients had breast cancer recurrence or progression in the pre-COVID (2.7%) and post-COVID (2.5%) periods (p-value = 0.44). Conclusions: Fewer post-treatment breast cancer patients received recommended annual breast cancer screening for surveillance in the post-COVID period compared to pre-COVID, but breast cancer recurrence or progression was similar between groups. Given the less frequent surveillance in the post-COVID period, cancer recurrence and progression should be evaluated over 5- and 10-year periods as data become available. [Table: see text]
Geographic variations in corporate sponsorship for cancer center charity events.
Authors: Shilling Mark W. , Hashemi-Sadraei Neda , Shah Satyan K. 
Published: June 2024

e23116 Background: Most cancer centers rely on fundraising to support their clinical mission. However, the type and mission of companies sponsoring such events is not well known. Our goal was to determine if the source of philanthropy varies in different regions of the USA. Methods: Institutional websites and search engines were used to identify one signature fundraising event per NCI-designated Comprehensive Cancer Center. An event website and occurrence between January 2021 and January 2025 was required for inclusion. Principal corporate donors were inferred based on level of sponsorship (i.e., presenting, gold, etc.) or order of prominence. These were collapsed into 5 categories based on the Global Industry Classification Standard: 1) Consumer 2) Financial-Real Estate 3) Healthcare 4) IT-Communications, and 5) Materials-Industrial-Energy-Utilities. Chi-square analysis was used to compare sponsorship across 4 regions of the USA and Fischer’s exact test was used to make post-hoc exploratory analyses. All non-major corporate sponsors were excluded. Results: A total 493 corporate sponsorships were identified for 38 events that met inclusion criteria. Specifically, these were run/cycle/walks in 16 (42%), dinner galas in 15 (40%), concerts in 2 (5%) and other in 3 (8%). Most commonly, sponsors came from the Consumer (27%) and Healthcare (23%) industries. The relative number of companies in each category varied significantly among different regions (p < 0.001). Post-hoc testing revealed the health industry favored the northeast region compared to other regions for sponsorship (p = 0.0025). Conclusions: Charity events are philanthropically supported by different corporate sectors in different regions of the United States. This information can help cancer centers become more efficient at fundraising. [Table: see text]
Impact of the COVID-19 pandemic on timely treatment among patients with breast, lung, and colorectal cancer.
Authors: Patel Tej A. , Orav E. John , Phelan Jessica , Tsai Thomas C. , Lam Miranda B. 
Published: June 2024

e23147 Background: COVID-19 has significantly disrupted cancer care delivery, with potential implications on patient outcomes and disease management. While prior studies have observed declines in cancer screenings and cancer-related encounters following COVID-19, less is known about broader treatment outcomes for patients with cancer. Moreover, examining nationwide trends in care delivery allows health systems and providers to identify barriers to high-value care and improve existing practices. Consequently, we use nationally representative data to assess the impact of COVID-19 on the timeliness of care for breast, lung, and colorectal cancer – three leading causes of cancer death in the United States. Methods: We performed a retrospective analysis of adults in the National Cancer Database who were diagnosed with primary breast, lung, and colorectal cancer between January 1, 2017, and December 31, 2021. The primary goal was to determine differences in time to treatment initiation (TTI), defined as the number of days between initial diagnosis and the date of first surgery, radiation, or systemic treatment. Patients who did not yet receive treatment or died during the analytic period were censored. Cox proportional hazards regression models, adjusting for sociodemographic and clinical variables, generated hazard ratios (HRs) with 95% CIs to assess the impact of a pre-COVID (2017-2019) or COVID (2020-2021) cancer diagnosis on TTI. Results: Of 1,635,644 patients with cancer that met inclusion criteria, 999,498 (61.1%) were diagnosed in the pre-COVID period and 636,084 (38.9%) were diagnosed in the COVID period. There was a decrease of 38,380 new cancer cases between 2019 and 2020. The median TTI for the pre-COVID cohort was 35 (IQR: 22-52) days while the median TTI for the COVID cohort was 36 (IQR: 24-55) days. Upon adjusting for covariates, however, TTI for the COVID cohort was shorter than that of the pre-COVID cohort (HR: 1.01, 95% CI [1.01-1.02], p < 0.001). Subgroup analyses by cancer type showed similar, shorter TTI for patients with breast cancer (HR: 1.02, 95% CI [1.01-1.02], p < 0.001). Based on significant interaction terms, we found shorter TTI during COVID for patients of Black (HR: 1.02, 95% CI [1.01-1.03], p < 0.01) and Asian (HR: 1.06, 95% CI [1.03-1.09], p < 0.001) race, as well as Hispanic ethnicity (HR: 1.03, 95% CI [1.01-1.05], p < 0.001). White patients did not have significant changes in TTI during COVID (HR: 1.00, 95% CI [0.99-1.01], p > 0.05).These results persisted in sensitivity analyses by treatment type. Conclusions: There was a decrease in the number of new diagnoses of breast, lung, and colorectal cancer during COVID compared to pre-COVID. Among those with new diagnoses, the COVID-19 pandemic was not associated with delays to necessary care or stark disparities among patients diagnosed with three common cancers, showcasing the resilience of oncology care during the public health emergency.
Claims and cost responsibility trends for high-deductible insurance plan participants with breast and prostate cancer in the New Hampshire Limited Use Commercial Health Care Claims data.
Authors: Dookeran Keith A. , Brunk-Grady Mark E. 
Published: June 2024

e23148 Background: High-deductible health plans (HDHPs) are popular in the US due to their potential to curb rising healthcare costs and involve higher out-of-pocket costs for consumers which are associated with lower utilization of health services. Data on longitudinal trends for claims and cost responsibility for adult HDHP participants with cancer is scarce, which was the motivation for our study. Methods: We used multivariable Poisson regression models with the Huber/White/Sandwich linearized estimator of variance and predictive margins [reported as counts with 95% confidence intervals (CI)] to examine the effect of HDHP status on select stratified estimates of (a) the average number of claims per enrollee (claims), and (b) the average total participant responsibility per enrollee visit (cost in $; i.e., the sum of in-network and out-of-network values), for adult (age > / = 18 years) participants in the New Hampshire Limited Use Commercial Health Care Claims data, with breast and prostate cancer (BC/PC) diagnoses for the 10-year period 2010-19. Final models were fully adjusted for other plan types, year, age, and quintile of ecologic income, and our final dataset consisted of 945,281 claim records. Results: Overall, BC and PC HDHP participants had significantly fewer claims over the 10-year period [average counts: (BC: -242.2; -244.6, -239.8); (PC: -445.3; -450.3, -440.4)]. In addition, BC and PC HDHP participants had significantly lower participant responsibility over the 10-year period [average $: (BC: -85.4; -87.5, -83.2); (PC: -104.9; -115.5, -94.2)]. Overall trends for claims across the entire time period for HDHP vs. non-HDHP BC/PC participants were consistently lower, and flat trends were observed for BC from 2014-19 and for PC from 2012-19; however, there was steady increase in claims for both BC/PC non-HDHP participants across the same late periods. The trend for participant responsibility for BC HDHP participants was also lower compared with non-HDHP for all years except 2014; and after 2014 increases were seen for both BC HDHP and non-HDHP participants with the latter showing the steepest increases. The trend for participant responsibility for PC HDHP participants was lower compared with non-HDHP between 2010-17; but this relationship inverted for 2018-19 with HDHP participants showing the highest participant responsibility levels. Conclusions: Our findings show discordance in claims trends for HDHP vs. non-HDHP participants with BC/PC; durable trends of reduced claims are observed for HDHP participants, but for non-HDHP participants claim trends show steady increases in later periods.
Financial toxicity (FT), quality of life (QoL), and medication adherence patient-reported outcomes (PROs) in CLL on first-line (1L) oral oncolytics.
Authors: Carroll Keegan , Gurfinkel Dennis , Tietbohl Caroline , Dorsey Holliman Brooke , Krongold Joseph , Hlubocky Fay J. , Daugherty Christopher K , Major Ajay 
Published: June 2024

e23157 Background: While oral oncolytics have transformed CLL treatment, high costs may cause significant FT adversely impacting patients beyond direct out-of-pocket (OOP) costs. The association of FT with QoL and medication adherence has not been characterized with oral oncolytics in CLL. Methods: Electronic PRO surveys were longitudinally administered to patients initiating any 1L oral oncolytic therapy for CLL within the last 6 months at two academic centers. PROs included FACIT-COST (significant FT: score < 26), FACT-LEU QoL, MARS-5 (suboptimal adherence: score < 25) and PROMIS PMAS to assess medication adherence. PROs were administered at baseline, 3 months, and 6 months after enrollment. Pearson’s correlation ( r) was calculated between PRO domains. Semi-structured, qualitative interviews were conducted after 3-month timepoints and analyzed. Results: 34 patients were enrolled: median age 65 yrs (range 33-80), 59% male, 6% Black, 9% Hispanic. Majority received BTK inhibitors (56%, acalabrutinib/zanubrutinib) followed by venetoclax (44%); 50% received concurrent obinutuzumab. Most had private insurance (50%) followed by Medicare (44%). Median time from 1L initiation to study enrollment: 1.5 months. PRO completion rates: 100% (baseline), 85% (3 mo) and 74% (6 mo). Summarized PRO and interview outcomes are displayed below. Conclusions: Patients with CLL on 1L oral oncolytics experienced worsening FT associated with poor medication adherence and worse QoL over time. PROs were discordant with qualitative interviews and suggested that FT may be driven by factors other than OOP costs. Although funding and patient assistance programs were beneficial, uncertainty over losing funding may be a long-term driver of FT and merits further study. [Table: see text]
Effects of nursing intervention based on gratitude extension-construction theory on gratitude level, recurrence fear and post-traumatic growth of patients with breast cancer after surgery.
Authors: Xie Xiuyuan , Xu Haiping , Fei Yujie , Liu Fenghe 
Published: June 2024

e23162 Background: To explore the effects of nursing intervention based on gratitude extension-construction theory on gratitude level, recurrence fear and post-traumatic growth of patients after breast cancer surgery. Methods: 104 patients with breast cancer treated in a large general hospital from August 2023 to January 2024 were selected as the study objects, and randomly divided into control group and intervention group with 52 cases in each group. The control group received routine nursing intervention, and the intervention group was treated with nursing intervention based on gratitude extension and construction theory on the basis of routine nursing intervention. The intervention plan included organizing patients to give motivational lectures before discharge, watching gratitude videos, and teaching patients to carry out positive memory, gratitude meditation and gratitude expression every day through bedside talk. After discharge, patients were instructed to conduct interest cultivation, gratitude expression, gratitude visit, gratitude diary and gratitude sharing through phone or wechat follow-up. After 12 weeks, the results were evaluated by general information questionnaire, gratitude level questionnaire, Cancer Recurrence Fear Scale, and post-traumatic Growth Rating Scale. Results: After intervention, the gratitude level of the intervention group was significantly higher than that of the control group (P < 0.001), the total score and all dimension scores of fear of cancer recurrence were significantly lower than those of control group (P < 0.05), post-traumatic growth score and all dimensions were higher than those of control group (P < 0.001). Conclusions: This study established a set of scientific, practical and effective intervention program suitable for patients with breast cancer after surgery to improve the level of gratitude, alleviate the fear of cancer recurrence, and promote post-traumatic growth, and verified that the intervention program can effectively improve the level of gratitude of patients, especially in the aspect of gratitude around people and matters. It can also alleviate the fear of cancer recurrence, overall worry, health worry, female worry, role worry, death worry, etc. Post-traumatic growth has been significantly improved, especially in terms of personal strength and interpersonal relationship improvement. Under the general trend that breast cancer has become the largest cancer in the world, it is one of the effective ways to improve the psychological state of breast cancer patients, and it is worth promoting in breast cancer patients.
Radiation dose esclation with contact X-ray brachytherapy (Papillon) and quality of life in patients with rectal cancer: Results from the phase 3 randomised trial OPERA.
Authors: Sun Myint Arthur , Than Nguwah , Pacé-Loscos Tanguy , Schiappa Renaud , Ai-Haq Muneeb , Sripadam Rajaram , Rao Christopher , Stead Sarah , Pritchard D. Mark , Gerard Jean Pierre ,   ICONE
Published: June 2024

e23180 Background: Organ preservation has been increasingly offered to patients with rectal cancer as most patients wish to avoid extirpative surgery and a stoma if they have a choice. The standard of care is to offer external beam chemo radiotherapy (EBCRT) to those who are fit. OPERA (Organ Preservation in Early Rectal Adenocarcinoma) has shown improved organ preservation rate with addition of contact X-ray brachytherapy(CXB-Arm B) compared to EBCRT with EBRT boost. We evaluate whether addition od CXB boost compromise the patients Quality of Life (QOL) compared to EBRT boost and if so by how much. We report our results at 38.2 months follow up. Methods: From June 2015 to June 2020, there were 148 patients randomised of which 141 were evaluable. We used EORCT QLQ -C30, QLQ -CR29 and modified LARS score at FU visits every 3 months during FU visit 1(8 weeks)-9 (32 weeks). Results: At screening (baseline) we enrolled 126 patients (Arm A: 59, Arm B: 66). At FU -1 we received questionnaire back from 78 patients (Arm A: 35, Arm B: 43). At FU-5 there were 55 patients (Arm A:18, Arm B: 37). Finally, at FU 8 there were 43 patients (Arm A: Arm B xx). Using EORTC QOL-C30 and QOL CR-29, global QOL score for Arm A was 77.6 vs Arm B 72.22 (p = 0.14). Mean functional scale (1-5) for Arm A was 95.2 vs Arm B 92.1 (p = 0.09). Role functioning scale (6-7) for Arm A was 91.2 vs Arm B 93.18 (p = 0.57). Emotional functioning (21-24) for Arm A was 77.5 vs Arm B 73.99 (p = 0.33). Cognitive functioning (20-25) for Arm A 87.85 vs Arm B 91.92(p = 0.17). Social functioning (26-27) for Arm A 95.2 vs Arm B 92.93 (p = 0.31). Conclusions: In our analysis so far, we do not detect significant difference in QOL between Arm A and Arm B. Consider Contact x-ray brachytherapy first in patients with rectal cancer < 3cm (Arm B1) which has shown higher organ preservation rate without effecting their QOL compare to EBCRT (Arm A1). Clinical trial information: NCT02505750 .