bluuebunny/crossref_metadata_2025_split huggingface dataset:
Using consistent terms in precision medicine to eliminate patient confusion.
Authors: Martin Nikki A. , Friedman Sue J. , Saxton Claire , Yarden Ronit , Lindsey Stacie , Kuhn Erica , Guglielmino Janine , Garcia Reese , Moravek Cassadie , Zajchowski Deborah A. , Miyahira Andrea K. , Montoya Denisse , Verini Christine , Schrag Janelle , Gonzalez Victor , Hooker Gillian , Bens Cynthia , Davison Beth , Horn Marcia K. 
Published: May 2020

e24164 Background: Biomarker testing has advanced precision medicine in cancer. However, not all eligible patients benefit from biomarker-driven therapies due to suboptimal testing rates. A working group of 20 patient advocacy groups representing solid/hematologic malignancies, three professional societies, and 18 pharmaceutical and diagnostics companies identified patient confusion inconsistent testing terms as a possible contributing factor to biomarker testing underutilization. The group aimed to address patients’ confusion by identifying and adopting consistent, plain language terms for biomarker and germline genetic testing that are applicable across cancer types. Methods: Following a stakeholder roundtable discussion on barriers to precision medicine, working group members participated in interviews on their goals for consistent testing terminology for their constituents. We then conducted a framework analysis covering five themes: available testing by cancer type; purpose of test; biospecimen source; terms used in patient education; and preferred plain language term. Working group members were surveyed on preferences for germline testing terminology and also deployed a preliminary patient survey to their constituents to gain insight on preferences for germline testing terms. Results: Interviews, framework analysis, and surveys revealed notable differences across cancer communities. We identified at least 33 different terms related to biomarker, genetic and genomic testing being used in patient education and clinical care among the different cancer communities and stakeholders. Terminology was complicated by the variety of testing modalities and gene mutations tested for across cancers. Following multiple discussions, working group members agreed on two umbrella terms to distinguish between somatic and germline testing with additional context for specific cancer communities. “Biomarker testing” was selected as the somatic testing term. “Genetic testing for an inherited mutation” and “genetic testing for inherited cancer risk” were selected as preferred germline testing terms. Conclusions: Our findings highlight the disparate testing terminology landscape and the need for consistent terms to reduce patient confusion, improve communication, facilitate shared decision-making and assure concordance in policy development.
Understanding the daily needs and challenges of caregivers of patients with lung cancer.
Authors: Zhu Yanyan , Scipione Fatima , Anderson Renee , DiPaolo Robin Y. , Miller Ros , Cherol Kristine , Draft Chris , Lester Georgeta , Bell Jill 
Published: May 2020

e24173 Background: Informal caregivers provide critical support in the management of all aspects of care for patients with cancer. Although caring for loved ones with cancer can be rewarding, it can also have a significant impact on caregivers’ quality of life. The aim of this study was to understand how caring for someone with advanced lung cancer affects caregivers’ lives. Methods: A targeted review of the caregiver literature (Medline, Embase, and Psych Info; year limits 2006-19) using a single search strategy, and qualitative focus group discussion among caregivers (N = 6) who have been or are currently caring for a loved one with advanced lung cancer was conducted. Results: The search identified 99 articles; however, few articles met eligibility criteria (N = 12). Impacts focused on: caring for patient, psycho-social well-being, ability to work, hopes for future, and physical well-being. Several gaps describing the caregiver experience remained based on the results from the literature review alone. Qualitative insights from caregivers included: (1) Caregivers must deal with all aspects of the patient’s experience, as well as the broader physical and emotional well-being of themselves and family members. (2) Disease-related symptoms and treatment-related side effects can result in physical and emotional distress for both caregivers and patients. (3) Caregivers feel hopeless, frustrated, and discouraged regarding side effects, particularly when they cannot perceive the benefits of treatment. (4) Caregivers are often compelled to mask or suppress their feelings to maintain a sense of (relative) normalcy. (5) Negative emotional states directly affect family relationships and dynamics, heightening stress and loneliness for caregivers. (6) Caregivers’ contributions to shared treatment decision-making relative to the patient’s role shift throughout the cancer journey based on their loved one’s ability to cope. Conclusions: These results provide valuable insights into the under-studied experience of caregivers of patients with lung cancer. Future quantitative research will improve understanding of the unique challenges associated with cancer caregiving, as well as facilitate development of personalized, evidence-based support programs and interventions for caregivers.
Decision aids for localized prostate cancer: Initial outcomes from NCI Community Oncology Research Program Alliance Research Base Cancer Care Delivery Research (CCDR) Protocol - A191402CD - A Cluster-Randomized Trial.
Authors: Tilburt Jon Charles , Pacyna Joel E , Petereit Daniel G. , Kaur Judith Salmon , Rapkin Bruce D. , Grubb Robert , Chang George J. , Morris Michael J. , Kovac Evan , Sloan Jeff A. , Basch Ethan M. , Storrrick Elizabeth M. , Zahrieh David , Dueck Amylou C. , Paskett Electra D. , Buckner Jan C. , Montori Victor , Frosch Domnick L , Volk Robert Joseph , Kim Simon P. 
Published: May 2020

e24176 Background: Decision aids for prostate cancer treatment can improve knowledge, but the relative effect of pre-consultation and within-consultation DAs is not known. Methods: We conducted a parallel design, 2-by-2 factorial, 4-arm, cluster-RCT in urology practices affiliated with the NCI’s Alliance research base. We compared patient knowledge immediately after consultation (%12-item% correct) intervention arms compared to usual care. We used mixed effects regression modeling to assess effect of interventions on knowledge adjusting for site-clustering, race/ethnicity (non-Hispanic White; Other), age (years), clinical stage (T1-3), PSA, and Gleason score. Results: 15 of 21 randomized centers accrued 158 pts from Nov 2017 to June 2019. The arm delivering both DAs (n = 3 sites) recruited 25 pts. The pre-consultation DA arm (n = 4 sites) recruited 39 pts. The within-consultation DA arm (n = 4 sites) recruited 44 pts. The no DA arm (n = 4 sites) accrued 50 pts. Overall, mean age was 64; 54% were AA; 73% had T1 stage; median Gleason = 7; and median PSA = 7. The combined DAs group, followed by pre-consultation reported higher median knowledge (75% and 67%, respectively). The within-consultation and no DA arms both reported median knowledge scores (58%). Within arm, inter-site standard deviations in mean knowledge scores ranged from 0.164 in in the pre-consultation arm to 0.232 in the usual care arm. Neither pre-consultation nor within-consultation DAs had statistically significant effects (p = .15 and p = .99, respectively). Pre-specified adjusted difference [97.5% CIs], comparing the pre-consultation DA and the within-consultation DA with the control was 9.4% [-7.3%, 26.2%] and -0.4% [-16.9%, 16.1%], respectively. Intra-cluster correlation (ICC) coefficient was high (.24). No interaction effects were identified (p = .98). A post-hoc analysis comparing any DA vs usual care found a mean adjusted difference [95% CI] of 5.6% [-8.5%, 19.8%] (p = 0.40), 63.9% for any DA and 58.3% for usual care. Conclusions: Possible knowledge gains associated with some DAs for early prostate cancer were obscured by larger-than-expected intra-cluster correlation effects associated with the primary outcome. How interventions were used was not measured. Support:UG1CA189823; https://acknowledgments.alliancefound.org ; R01 MD008934-06. Clinical trial information: NCT03103321 .
Evaluating sexual function in adolescent and young adult childhood cancer survivors.
Authors: Sopfe Jenna , Marsh Rebekah , Appiah Leslie C. , Klosky James L. , Peterson Pamela N , DorseyHolliman Brooke 
Published: May 2020

e24180 Background: Up to half of adolescent and young adult (AYA) childhood cancer survivors (CCS) experience sexual dysfunction (SD) as a result cancer or its treatment. SD in CCS is under-recognized, with low levels of routine screening due to barriers such as discomfort, time, and awareness. This study explores solutions to these barriers by describing AYA CCS preferences for implementation of screening for SD and evaluating the utility of a validated adult screening tool (PROMIS SexFS Brief) in this population. Methods: 16 AYA CCS (aged 15-24 years) completed semi-structured interviews followed by questionnaire completion. Interviews explored patients’ prior experiences with SD screening, along with preferences for screening type (e.g., discussion, screening tool), delivery modality, and timing. Patients then completed the PROMIS SexFS Brief while verbalizing their thoughts and providing open-ended responses to each item. Transcribed interviews were inductively coded and analyzed, guided by content analysis methodology. Results: This analysis represents 2/3 of planned interviews, and all will be completed by April 1, 2020. Interviews were performed with 11 females and 5 males (median age 21). Preliminary analysis demonstrates that participants had minimal experience with SD conversations, but had preferences regarding by whom, how, and when screening/education should occur. Who: Participants felt providers should have preexisting rapport with their patients; preferences existed for provider role and sex/age. How: A combination of written materials and in-person conversations was preferred. Several acknowledged a desire to have a “warning” that the conversation would happen, such as through a questionnaire. Participants did not have a preference regarding delivery modality (paper vs. online). The PROMIS SexFS Brief appeared to demonstrate content validity and acceptability in AYA CCS. When: Participants wanted education and screening to occur regularly throughout cancer therapy and survivorship. SD conversations should be tailored developmentally to the patient. Conclusions: Our results demonstrate a theme throughout interviews of the importance of patient/provider rapport. Further, while AYA CCS prefer in-person conversations about SD, conversations should be preceded by written information or a questionnaire to increase patient preparedness/comfort. Preliminary findings suggest that the PROMIS SexFS Brief is a promising tool for screening SD in this population; further studies evaluating use in clinical settings is warranted.
Patient knowledge and expectations of anti-cancer treatments in the advanced disease setting.
Authors: Cowzer Darren , Hennessy Maeve , Linehan Anna , coyne zac , Creegan Daniel , Glynn Emily , Hennessy Bryan T. , Morris Patrick G. , Grogan William , Breathnach Oscar S. 
Published: May 2020

e24187 Background: Systemic treatments can improve symptom burden and prolong life in patients with advanced cancer. However, these therapies come with associated toxicities and in some cases can result in reduced quality of life for patients with no possibility of cure. International data has suggested that this cohort of patients have a poor understanding surrounding the goals of treatment in the advanced disease setting. We aimed to evaluate the expectations for cure and palliation from systemic therapies among patients with advanced, incurable cancer in our institution. Methods: Patients on active treatment attending the Oncology Day Ward completed anonymous questionnaires over a four week period. Personal demographics, decision making for treatment and expectation of benefit and toxicity was assessed. Analysis was carried out on patients assessed to have advanced metastatic disease. Results: 254 patients completed the questionnaire. 217 patients were assessed to have metastatic/incurable disease based on responses. 57% were male, 56% were age 30-64 and 35% had completed university level education. 42% of patients stated that treatment was very likely or somewhat likely to cure their cancer. Among patients who reported that a cure was very likely, there were more men (62%) compared to women (38%), more patients were aged less than 65 (62%) compared to over 65 (38%) and more patients had only completed elementary school level education (71%) compared to university level education (29%). Most patients (84%) felt treatment was either very likely or somewhat likely to help them live longer. 68% of patients felt treatment would help them with problems related to their cancer and 33% of patients felt that treatment was very likely to have side effects or complications. 22% of patients stated that doctors made decisions without their input. Conclusions: Many patients receiving treatment for incurable cancers do not understand that it is unlikely to be curative. Male gender, younger age and a lower level of education appears to be associated with unrealistic expectations. This could compromise their ability to make informed treatment decisions. More effective communication around goals of treatment and end of life care may help to improve patients understanding and expectations around the outcomes of chemotherapy.
Trends in patient misperception and decisional regret during treatment for advanced cancer: A prospective study.
Authors: Miller Eric James , Patell Rushad , Einstein David Johnson , Halleck Jennifer , Dodge Laura , Buss Mary K. 
Published: May 2020

e24190 Background: Cancer patients receiving palliative therapy often misperceive the likelihood of benefits and toxicity. Change in misperception during treatment and decisional regret after has not been studied. We assessed shifts in perception of treatment outcomes and decisional regret after treatment in a single-center prospective study. Methods: We enrolled patients with advanced solid cancer starting palliative intent treatment. At baseline, both patients and their treating physicians were asked about their perceived likelihood of treatment response, symptom palliation, survival benefit, and treatment toxicity on scale of 0-100% at start of treatment and at follow-up. The Signed Rank tested whether patient perception changed significantly over time. After treatment, patients alive and not in hospice were asked about their decision to undergo treatment. Results: Of 122 patients with baseline estimates, 65% completed at least one follow-up survey while undergoing treatment. At enrollment, respondents’ mean age was 65 years (range: 32–89); 54% were male. Compared to baseline, there was no change in patients’ perceptions of treatment response, survival benefit, toxicity (all P≥0.52) at follow-up; a trend toward change in perceived curative potential (P = 0.06); an increase (of 7 points) of perceived likelihood of symptom relief (P = 0.04). Perceived likelihood of treatment response and symptom relief increased (both P < 0.03) among patients whose baseline estimates of treatment response were lower than or similar to their physicians’ estimates. Conversely, perceived likelihood of treatment response (P = 0.01) and curative potential (P = 0.02) decreased among patients with more optimistic estimates than their physicians’. Of the surviving 63 patients, 33 (52%) completed the end of treatment survey, 24 were unreachable and 6 declined. Median time of survey response was at 41.2 weeks (IQR: 36.4 – 47.9). Nearly all (95%) agreed that treatment was the right decision. None regretted their choice; 79% agreed they would make the same choice if they had to do it again; 12% agreed that treatment did them a lot of harm. Conclusions: Patients’ perceptions of treatment response converged during therapy as compared to their physicians at baseline. Of surviving patients surveyed, none regretted their decision to receive palliative cancer treatment. Treatment expectations evolve over time, highlighting opportunities for enhanced communication and patient education beyond initial consent procedures.
Drivers and barriers to clinical trials (CTs) participation among oncological and non-oncological patients in Poland: A cross sectional survey.
Authors: Kotowski Artur , Świetlik Dariusz , Kotowska Maja Dominika , Wronowski Michał , Fal Andrzej Mariusz 
Published: May 2020

e24191 Background: Understanding patients decision-making process regarding participation in a clinical trial (CT) is crucial for research associates. It enables efficient recruitment and timely completion of a study. The patients perspective is becoming increasingly important worldwide however Polish patients attitudes to CTs have not been studied well enough yet. This study analyses multiple factors influencing oncological (onco) and non-oncological (non-onco) patients decisions to participate in CTs. Methods: Total of 401 hospitalized adults who have never participated in a CT were recruited to take a paper and pencil interview survey. 211 patients (52.6%) were diagnosed or treated for cancer and 190 (47.4%) for non-oncological diseases. The majority of respondents were: (1) women: 256 (63.8%), (2) people with secondary education: 223 (55.6%), (3) at the age of 60-69: 147 (36.7%), (4) living in cities over 100k inhabitants: 179 (44.8%). Results: If proposed, 49.9% of all respondents would agree to be enrolled in a CT (non-onco 52.1% vs onco 47.8%, p = 0.61); 14.9% would refuse (13.3% vs 16.3% respectively) and 35.2% were not certain about the decision (34.6% vs 35.9%). Top two drivers for participation in CTs of non-onco patients were: chance of receiving a new drug (78.6%) and better access to medical care (74.5%), while for oncological respondents: better access to medical care (77.0%) and to additional diagnostic tests (76.0%). Altruism was declared by a total of 54.5% respondents. Main reasons for not participating were: concerns about toxicity – 57.6% (p = 0.14), about lack of efficacy – 44.1% (p = 0.01) and refusal to be a “guinea pig” – 59.3% (p = 0.23). For uncertain respondents, the most convincing factors for enrollment was a terminal phase of the disease: 57.1% in total (onco 69.3% vs non-onco 43.1%, p = 0.01). The results of subanalyses based on demography and type of diagnosis were not of statistical significance. Conclusions: The willingness to participate in CTs is high, which is mainly driven by a chance for a better access to medical care and additional diagnostic tests. Improved access to state-financed care and innovative medicines for chronically ill patients in Poland are needed.
Cancer patients’ perceptions of physicians who use an integrated electronic health record (EHR) approach during clinic visits: A double-blinded randomized clinical trial (RCT).
Authors: Haider Ali , Azhar Ahsan , Tanco Kimberson Cochien , Naqvi Syed Mussadiq Ali Akbar , Epner Margeaux , Reddy Akhila Sunkepally , Williams Janet L. , Wu Jimin , Bruera Eduardo 
Published: May 2020

e24201 Background: Our previous RCT found that cancer patients prefer and positively perceive physicians who communicate face-to-face as compared to using the EHR. However, the use of EHR in the examination room remains a practical necessity. Based on the existing literature, our team developed a simple and very short intervention to integrate the EHR into the encounter, which includes optimal positioning of the computer, a proper introduction to the computer, effective time management for data-entry while maintaining patient-physician interaction and use of the EHR as a tool to enhance patient education. Methods: In this double-blind, crossover RCT, 120 patients with advanced cancer were enrolled between April 1, 2019, and September 15, 2019. Our objectives were to compare patients’ perceptions of physicians’ compassion, communication skills, professionalism, and patients’ overall physician preference after watching 2 standardized scripted-video vignettes of physicians: one portraying the use of a standard EHR approach and the other portraying use of an integrated EHR approach. Both actors and patients were blinded to the purpose of the study. Investigators were blinded to the sequence of videos watched by the patients. After viewing each video, patients completed validated questionnaires rating their perception of the physician’s compassion (0 = best, 50 = worst), communication skills (0 = poor, 70 = excellent) and professionalism (0 = poor, 20 = very good). Patients were also asked to rate their overall physician preference. Results: After watching the first video, the integrated EHR, compared to the standard EHR, resulted in better scores for physician compassion (median [interquartile range], (5[0-10] vs 12[4-25]; P = .0009), communication skills (69[63-70] vs 61[50-69]; P = .0026) and professionalism (20[18-20] vs 18[14-20]; P = .0058). The majority of cancer patients preferred an integrated EHR physician as their provider (70[58%] vs 21[18%], P < 0.0001). Patients with college or an advanced degree had a 5 times higher chance of preferring an integrated EHR physician ( P < 0.0171). Conclusions: Cancer patients perceived physicians who used an integrated EHR approach as more compassionate, professional, and with better communication skills. Moreover, they preferred an integrated EHR physician to be their provider. Integrated EHR has the potential to improve communication in oncological settings. Clinical trial information: NCT03856060 .