bluuebunny/crossref_metadata_2025_split huggingface dataset:
Ask Questions (ASQ): Implementation of a question prompt list communication intervention in a network of outpatient medical oncology clinics.
Authors: Hamel Lauren M. , Moore Tanina Foster , Mattei Larissa H. , Jang Hyejeong , Kim Seongho , Keaton-Williams Kimberly , Brown-Miller Voncile M. , Eggly Susan 
Published: June 2023

e24185 Background: High-quality, patient-centered communication is not experienced equitably across patient populations, likely contributing to healthcare disparities. Question Prompt Lists (QPL) improve patient active participation and other aspects of patient-physician communication in diverse populations and settings. This descriptive, single-arm study assessed the implementation and patient perceptions of a previously-developed, evidence-based QPL, the ASQ brochure, across a network of oncology clinics providing care in a diverse population across Michigan. Methods: The QPL was revised in collaboration with community and physician stakeholders. Implementation was assessed through the reach, adoption, and efficacy domains of the RE-AIM framework. Eligible patients had a cancer diagnosis and were scheduled for a first appointment with an oncologist at any of eight participating clinics. All participants received the ASQ brochure and completed three surveys: one at baseline, one immediately before their appointment, and one following their appointment. Surveys assessed sociodemographic characteristics; communication-related outcomes (knowledge, self-efficacy in interacting with physicians, trust in physicians, distress); and perceptions of the ASQ brochure. Analyses included descriptive statistics and univariable and multivariable linear mixed-effects models. Results: Reach: A total of 81 patients participated with a consent rate of 68.3%. Self-identified racial/ethnic groups were representative of the population served by the clinic network (72.4% white, 21.0% black, 3.7% American Indian/Native Alaskan, and 1.2% Mexican/Hispanic). Adoption: All eight invited clinics participated and recruited patients. Efficacy: All outcomes improved significantly, with no significant differences by clinic site or patient race. Patient perceptions of the ASQ brochure were overwhelmingly positive. Conclusions: The implementation of the ASQ brochure was successful in this oncology clinic network providing care to a diverse patient population. Findings suggest this simple, evidence-based communication intervention should be implemented widely in similar clinical contexts.
Transplant teeter-totter: How hematologists communicate the high risk, high reward nature of allogeneic hematopoietic cell transplant with patients.
Authors: Rodenbach Rachel , Thordardottir Thorunn Halldora , Campbell Toby Christopher 
Published: June 2023

e24189 Background: While allogeneic hematopoietic cell transplant (HCT) offers a chance of cure for many patients with aggressive blood cancers, it carries many risks. Little is known about how hematologists communicate this uncertainty with patients. In this secondary analysis from a telemedicine study assessing how transplant hematologists facilitate shared decision making with patients, we evaluated how physicians discuss the high risk, high reward concept of allogeneic HCT. Methods: This is a qualitative analysis of transcribed video-recorded virtual encounters of transplant hematologists with patient actors. We recruited US hematologists who routinely perform allogeneic HCT via email. Participants conducted up to an hour-long video encounter with an actor trained to portray a 67-year-old man recently diagnosed with high-risk myelodysplastic syndrome and referred for specialty hematology consultation for discussion of treatment options. Results: Transcripts from 33 hematologists (mean age 46 +/- 11 years; 61% male) were available at the time of analysis. Hematologists frequently used “teeter-totter” language that oscillated between optimistic encouragement and cautious hesitancy about allogeneic HCT: HCT represented the best and only chance for cure, but it was dangerous, required sacrifice, and did not ensure long term survival. Many hematologists used tentative hedging to describe HCT’s intent for possible (rather than certain) cure, and many detailed the effect of potential undesirable complications on survival and quality of life. They also acknowledged that given HCT’s unpredictability and complexity, prognostication for any individual patient was difficult if not impossible, especially early on. The teeter-totter language frequently occurred within the same sentence or speaker turn (e.g. it may “give[] you a cure, but it comes at a price”) and also played out more gradually throughout the encounter both in exchanges between hematologist and patient and by the hematologist. With respect to decision making, some hematologists expressed their goal for the patient to understand the teeter-totter of transplant in order to make a well-informed decision based upon the patient’s personal risk tolerance/aversion. Others proposed that they share an acceptance of the teeter-totter and together deal with complications one step at a time along the transplant journey. Many reinforced that transplant offered the best chance for long term survival despite the risks and that they would do everything they could to help the patient achieve this. Conclusions: Hematologists use “teeter-totter” language to express uncertainty, hope, and caution about the high risk, high reward nature of allogeneic HCT. This language is used to prepare patients for unpredictable and uncontrollable aspects of the transplant journey and to inform decision making.
Willingness of women at increased genetic and non-genetic risk of breast cancer to participate in intervention trials to prevent cancer.
Authors: Mastrogiacomo Cecilia , Thompson Patricia , Moyer Anne , Preece Christina , Stopeck Alison 
Published: June 2023

e24190 Background: The factors that influence willingness to participate (WTP) in breast cancer (BC) prevention trials are not well understood. WTP in BC prevention trials was examined in patients at increased risk of BC considering intervention and participant characteristics. Methods: Women self-identifying as being at increased risk for BC were recruited to a cross-sectional study of WTP in BC prevention trials. 78% (87 of 112) of participants completed ≥50% of a 29 item Likert Scale questionnaire about WTP in BC prevention trials that varied in intervention type and intensity, duration, time commitment, study procedures, and side effects of medications. Responses were dichotomized into “more willing” (“a lot” and “moderately”) versus “less willing” (“some,” “a little,” and “not at all”). A chi-square test was used to determine if responses differed between participants based on intervention and participant characteristics. Results: General WTP in BC ‘prevention’ studies was high at 79% “more willing”, including 67% and 72%, respectively, for unspecified physical activity and diet behavior change interventions. WTP differed significantly for diet-based behavior change interventions by type and duration; WTP was significantly lower for 12- versus 3-month interventions for both eliminating foods (28% versus 53% “more willing”, p = 0.0007) and for engaging in intermittent fasting (30% versus 45% “more willing”, p = 0.042). For physical activity, WTP decreased with duration of the intervention with 28% fewer WTP for one hour of low intensity exercise/day when compared to 30 minutes (p < 0.0001). For medications, less than half of participants (46%) expressed being “more willing” to participate, and WTP decreased significantly when possible side effects were presented (81% “less willing”) with 95% “less willing” for medications with a rare risk of serious side effects. WTP was influenced by BC risk gene mutation status, with higher proportions among gene carriers compared to non-gene carriers (59% versus 21% “more willing,” p = 0.0013), including WTP in medication chemoprevention studies (38% versus 8% “more willing,” p = 0.002). Conclusions: WTP in BC prevention trials of behavior change is high among patients at elevated risk of BC but for all women was found to be significantly negatively influenced by greater time commitment and duration of intervention beyond a few months. WTP in studies of medication is lower compared to behavior change, and very low for medications with any side effects. Overall, WTP is greater in women with known genetic risk. This study suggests that WTP may be influenced by how patients perceive their level of risk. These results also suggest that despite interest in behavior change prevention, patients may not fully recognize the relationship between sustained behavior change and potential for prevention benefit.
How did the COVID-19 pandemic affect the management of patients with cancer? What is the impact of anti-cancer medications on the immune response to the COVID-19 vaccinations?.
Authors: Abdelsalam Mahmoud , Salem Maged , McPherson Alexander , Abdel-Samad Nizar , Obrien Pierre , Ross Laura , Sughayar Rana , Avileli Mrudula 
Published: June 2023

e24193 Background: This study had two objectives: To assess the impact of the COVID-19 pandemic on cancer patients’ management. To determine the impact of cancer types and anti-cancer medications on the immune response to COVID-19 vaccinations. Methods: Cancer patients at the Moncton Hospital, Oncology/Hematology Clinic, were invited to voluntarily complete a survey about the date of their cancer diagnosis, treatment, the impact of the COVID-19 pandemic on their health, and to complete a prepared list of possible side effects that they experienced after receiving any of the COVID-19 vaccines. Participants, who had received at least two doses of any COVID-19 vaccine, were given the option to consent to a sub-study to provide a blood sample to check their antibody response to the COVID-19 vaccination. Blood samples were collected at least 4 weeks after the second dose of a primary vaccine series, or at least 2 weeks after any booster dose. Samples were sent to the Dr. Georges-L.-Dumont University Hospital lab to be analyzed. Data was collected regarding the type of treatment (chemotherapy, immunotherapy, targeted therapy, hormonal therapy, radiation therapy, or a combination of these therapies). Analysis of the data was done using SPSS program. Results: 178 patients completed the survey. 117 patients had solid tumors, and 61 had a hematological malignancy. The mean age was 65.75 (range 31-90) years and 45.5% were males. 62.3% either had a high school diploma or a graduate degree. When asked if their anxiety about their health increased due to the pandemic, 57.8% reported that their anxiety level has moderately or somewhat increased. Similarly, around 70% responded that their stress levels moderately or somewhat increased due to the pandemic. Only 7.3% of patients mentioned that they had delays in diagnosis, and only 2.8% had changes in their treatment, however, around 30% had their appointments changed into phone appointments as a result of the pandemic. Only 4% reported a loss of job due to the pandemic, and 11.2% reported financial stress. Cross tabulations were done between type of cancer and results of the COVID-19 antibody test and type of treatment and results of the COVID-19 antibody test. Results showed that the type of treatment that the patient was receiving has no impact on the production of COVID-19 antibodies. However, antibodies after COVID-19 vaccination were not detected in 20.5% (10/49) of patients with hematological malignancies compared to 3.6% (3/82) of patients with solid tumors. This difference was statistically significant (p = 0.001). Conclusions: The pandemic affected Cancer patients in terms of increasing their anxiety and stress levels. The production of antibodies after COVID-19 vaccinations was significantly decreased in patients with hematological malignancies.
Effectiveness of a video-based educational training program to enhance primary care providers confidence and self-efficacy in the management of cancer survivors.
Authors: Gilmore Katherine Ramsey , Nguyen Linh K. , Bortolotti Julie S. , Nguyen-Vu Nancy N. , Reygaerts Hannah , Johnson Lance , Hartman Ronda L. , Murphy Thomas J. , Rodriguez Maria Alma 
Published: June 2023

e24194 Background: As of January 2019, there were over 1.1 million cancer survivors residing in Texas. It is well documented that primary care providers (PCPs) currently care for a large number of cancer survivors but may not receive adequate training to offer comprehensive survivorship care. Through training and education, this project aims to increase the confidence and self-efficacy of PCPs providing care to survivors and to improve overall health outcomes based on comprehensive domains of care. Methods: Focus groups and surveys were conducted with PCPs in a community-based family practice to identify potential knowledge gaps and confidence related to survivorship care. We developed and distributed a video-based training curriculum consisting of four domains of survivorship care and the management of four common cancers. We used the Survey of Physician Attitudes Regarding the Care of Cancer Survivors (SPARCCS) to conduct pre- and post-training evaluation. Results: Seventeen (100%) providers completed the pre- and post-training SPARCCS. The survey results showed that 94% of the PCPs have previously provided care for patients diagnosed with cancers. However, prior to training only 6-18% felt very confident in their knowledge of cancer-related follow-up care for breast, colorectal, lung, and prostate cancer survivors and 24-41% felt not at all confident. All participants completed 8 video-based education modules (approximately 6 hours of education). Post-training results indicated 18-29% of providers felt very confident in the domains in questions and only 12% lacked confidence related to the management of long-term and late physical adverse effects (Table 1). Conclusions: Video-based educational training can improve the confidence and self-efficacy of PCPs in the care and management of cancer survivors. Continued evaluations are planned to assess the sustainability of this demonstrated improvement over time. [Table: see text]
Evaluation of the psychological state of patients suspected of Lynch syndrome after the germline genetic testing result.
Authors: Barbosa Oliveira Francisca Fernanda , Sant'Ana Rosane Oliveira , Picanço-Albuquerque Clarissa Gondim , Luciano Maria Claudia dos Santos , Bastos Jose Fernando , Bitencourt Flávio da Silveira , Bezerra Maria Júlia Barbosa , Souza Thuany Pinto Rocha de , Silva Paulo Goberlanio de Barros , Freitas Karisa Lorena , Silva-Fernandes Isabelle Joyce de Lima 
Published: June 2023

e24201 Background: Lynch syndrome (LS) also known as Hereditary Non-Polyposis Colorectal Cancer (HNPCC) syndrome, is caused by a deficiency of Mismatch Repair Complex (MMR) enzymes. It is an autosomal dominant syndrome associated with an increased risk of developing colorectal cancer and other neoplasms, which can be confirmed using a germline molecular test. Psychological distress can be triggered regardless of the genetic test result. How the individual reacts emotionally and psychologically to the development can influence the processing of information and guidelines and adherence to preventive strategies. In this context, tracking anxiety symptoms provides opportunities for psychosocial follow-up planning. Objective: to evaluate levels of anxiety and depression in cancer patients suspected of having LS submitted to genetic testing. Methods: 84 patients with clinical criteria for LS were submitted to the germline genetic panel by NGS and immediately after the genetic test result, answered the Hospital Anxiety and Depression Scales (HADS). Data were expressed as mean±SD and compared using the Mann-Whitney, Kruskal-Wallis/Dunn, and Spearman correlation tests (SPSS v20.0, p < 0.05). Results: The mean levels of anxiety (5.59±3.31) were significantly higher than that of depression (4.63±3.58) ( p= 0.007), both domains were positively correlated ( p< 0.001, r= 0.447). Eighteen patients (21.4%) had pathogenic mutations in genes of the MMR complex. A positive diagnosis did not affect levels of anxiety or depression (pathogenic variant p= 0.617 and p= 0.478; Significance Uncertain-VUS p= 0.415 and p= 0.561, respectively). Females had higher levels of depression than males ( p= 0.047, with a relative risk of 1.65 times; CI95% = 1.05-13.19); however, other clinical and therapeutic characteristics did not significantly influence anxiety levels or depression. Conclusions: Colorectal cancer women are most sensitive to depression after germline genetic testing, despite the results. These findings reinforce the need for psychological screening of individuals undergoing genetic testing for LS and continuing psychological follow-up after receiving the genetic test.
Therapy preferences of patients with cancer.
Authors: Dhakal Prajwal , Wichman Christopher S. , Pozehl Bunny J. , Elnair Radowan , Yellala Amulya , Mahato Kalika , Bhatt Vijaya Raj 
Published: June 2023

e24205 Background: Clear understanding of patient (pt) preferences is crucial for creating a treatment (tx) plan that aligns with pt's goals and expectations. We developed "Therapy Preference Scale" (TPS), a self-reported questionnaire, to measure tx preferences of pts with cancer. TPS includes 30 questions: 19 questions on pt preferences on safety, efficacy, and other aspects of therapy (on scale of 0-10), 8 questions on importance of different aspects of tx (on 4-item Likert scale with choices of 'strongly disagree,' 'disagree,' 'agree,' and 'strongly agree.'), and 3 questions on intent of therapy, expenses, and life expectancy gain. This report presents results of the 8 questions rated on the 4-item Likert scale from a prospective study using TPS. Methods: 300 pts > 18 yrs with a cancer diagnosis completed TPS. We divided pts into 4 groups: Male < 60 yrs (M < 60), Male ≥60 yrs (M ≥60), Female < 60 yrs (F < 60), and Female ≥60 yrs (F ≥60). We compared responses between M < 60 and M≥60 and between F < 60 and F≥60. The responses were categorized into 2 groups: "disagree" (combining "strongly disagree" and "disagree") and "agree" (combining "strongly agree" and "agree"). Results: Median age was 61 yrs (range 19-89). 62% had solid tumors. 57% indicated cure as their tx goal versus gain in life expectancy without cure (35%) or symptom relief (8%). 4 groups were 20% M < 60, 32% M ≥60, 19% F < 60, and 29% F ≥60. M < 60 were more likely to accept tx with side effects and financial burden, while M ≥60 prioritized avoiding poor quality of life (QoL). F < 60 were more likely to undergo tx causing significant pain, while F ≥60 would avoid permanent cognitive impairment. Table 1 shows percentage of pts who agreed with the 8 questions. Conclusions: Despite similar preferences for a cure, age and gender play role in prioritizing tx options, including those with potential side effects such as life-threatening infection, poor QoL, financial burden, severe pain, and permanent cognitive impairment. TPS can improve the precision medicine approach and aid in choosing the right tx for each pt. [Table: see text]
The semantics of cancer: An experimental study in the meaning and use of cancer-related terms among surgical professionals.
Authors: Raghunathan Rajam , Rett Jessica , Raghunathan Rajam , Eilber Frederick C. 
Published: June 2023

e24216 Background: Because cancer does not form a natural kind, there is no list of properties that can exhaustively define it. Consequently, philosophers would expect the meaning of the term “cancer” to be subjective and variable, even across medical specialties. We hypothesized that a semantic difference regarding the understanding of “cancer” leads to diagnostic miscommunication. The goal of this multi-phase project is to better understand, quantify and compare expert and non-expert interpretations of the word “cancer” to help address this discrepancy. Methods: A 26-question online survey was administered to 72 English-speaking medical professionals at surgical grand rounds at the University of California, Los Angeles on October 17, 2022. Respondents were provided with 15-20 minutes to complete the survey questions, consisting of: demographics; level of experience with cancer diagnoses; a one-sentence definition of cancer; three words or phrases to describe cancer; ranking four properties as criteria for defining cancer; a short description of six conditions followed by three questions per condition on whether it qualifies as cancer, should be called “cancer,” and ought to be described as “cancer” in diagnosis delivery; ranking 10 cancers provided in order of how much they qualify as a cancer, from most to least "cancer-y." Results: Sixty-three percent of respondents were from surgical disciplines and 22% were attending surgeons. The majority (55%) reported “quite a lot of experience” with delivering cancer diagnoses. On a 7-point Likert scale from “not a cancer” (1 point) to “definitely a cancer,” no result received a 100% ranking in either category: 54% of respondents described micro-papillary thyroid carcinoma (mPTC) as “not a cancer” ( < 6 points) while 53% of respondents described benign metastasizing leiomyomas as cancer ( > 3 points). This suggests a widespread variation and distribution of “cancer” across subjects. While only 46% of respondents thought mPTC was “definitely a cancer,” 71% felt it should be called “cancer” ( p < 0.0001). Conversely, 47% of respondents felt that benign metastasizing leiomyoma did not qualify as a cancer, but this was less significantly related to feeling that the term “cancer” should be avoided in its diagnosis delivery ( p =0.001). Conclusions: The first-phase our study presents the results obtained among surgical professionals. Variability in usage of the term “cancer” points to a gradient of understanding of what qualifies as "cancer" and in what context the term "cancer" should be used. This gradient in semantic understanding of "cancer" contributes to diagnostic miscommunication and leads to over-treatment. Future studies will focus on how different medical professionals and non-professionals understand "cancer," to mitigate misunderstanding in diagnosis and reduce over-treatment.