bluuebunny/crossref_metadata_2025_split huggingface dataset:
Information needs when deciding to start a new line of therapy for advanced cancer: Are patients, caregivers, and oncologists aligned?
Authors: Sloss Elizabeth A , Staes Catherine Janes , McPherson Jordan P. , Scheese Carolyn M , Taft Teresa , Guo Jia-Wen 
Published: October 2023

315 Background: Effective decision-making on whether to start the next line of therapy for advanced cancer requires comprehensive, tailored information aligned with needs and preferences of patients and caregivers. Our study aimed to compare patient and caregiver information needs to information that oncologists consider and share when discussing prognosis before starting a new line of therapy. Methods: Our study used Latent Dirichlet Allocation (LDA)-based topic modeling, a text mining method, to extract topics embedded in semi-structured interview transcripts from patient and caregiver (n=20) and oncologist (n=10) participants. Transcripts were collected as part of a larger study to design an interface for a prognostic tool. Patients and caregivers were asked to identify information needs when deciding to start a new line of therapy. Oncologists were asked through critical incident technique to recall a recent patient encounter and, with probing questions, describe information they consider and how they communicate expected survival time. Two members of the study team identified extracted topics using an interactive, intertopic distance map, then compared topics between patient/caregiver and oncologist datasets. Results: Results revealed 6 distinct topics from patients and caregivers and 6 distinct topics from oncologists that we grouped into 3 overall themes (Table 1). While topics across both participant groups were similar, two notable differences were found in patient and caregiver interviews: 1) the desire for information about support-related resources, which was not noted by oncologists, and 2) topics included keywords like “helpful” and “clear” to describe information needs, highlighting the importance of how information is presented by oncologists. Conclusions: LDA-based topic modeling was useful to identify topics from transcripts, highlighting information needs and what is shared when discussing prognosis and starting a new line of therapy. Limitations include use of self-reported descriptions and lack of actual conversations between patients and oncologists. However, findings show the ongoing gap in communication about support-related resources when discussing prognosis. Opportunities exist to enhance communication about prognosis and promote access to resources using decision support tools.[Table: see text]
Consuming patients’ days: Time spent on ambulatory visits by persons with cancer.
Authors: Kagalwalla Sana , Tsai Alexander K , George Manju , Waldock Anna , Davis Sydney , Jewett Patricia , Vogel Rachel I. , Ganguli Ishani , Booth Christopher M. , Dusetzina Stacie B , Rocque Gabrielle Betty , Blaes Anne Hudson , Gupta Arjun 
Published: October 2023

324 Background: Health care-related time burdens faced by persons with cancer can be substantial. In qualitative work, patients report that ‘’seemingly short clinic visits (e.g., a supposed 10-minute blood draw) often turn into all-day affairs.” We sought to estimate the total time spent (home-to-home) by patients with cancer on ambulatory services at an urban cancer center. Methods: We conducted a retrospective study of all patients with cancer scheduled for any ambulatory care (e.g., laboratory testing, imaging, procedures, infusions, clinician visits) at a Midwestern academic cancer center during a randomly selected week (Monday-Friday) in January 2023. We extracted sociodemographics, clinical characteristics, and services received from the electronic medical record. The primary exposure was the ambulatory care type or combination received by a patient on a day (e.g., clinician visit only, labs and infusion, etc.). Using data from the Real-Time Location System (RTLS) badge that patients wear from clinic entry to exit (standard of care to optimize clinic workflow), we tracked time spent in each patient location (e.g., exam room) and in the clinic overall. We estimated round-trip travel times using home and clinic zip codes and SAS/Google Maps. We calculated median parking time by directly observing 20 random patients between the clinic and their vehicles (e.g., parking ramp or valet). We calculated and summarized clinic and total (clinic + travel + parking) times for different ambulatory care types. Results: We analyzed 468 encounters by 436 unique patients (median age, 64 years, 52% women, 82% white race, 19% breast cancer). Median (IQR) clinic time per encounter was 118 (76-200) minutes. The median (IQR) round-trip driving distance and travel time was 33 (21-53) miles and 50 (36-68) minutes. The median parking time was 8 (6-10) minutes. The median (IQR) total time was 189 (136-277) minutes. Table 1 presents the times by type(s) of ambulatory services. Conclusions: In this single-center retrospective study, pursuing ambulatory cancer care on a given day required patients (and their accompanying care partners) to commit several hours to their care. These findings highlight the need to decrease care time demands on patients to mitigate time toxicity. Accounting for opportunity time costs and the coordination of other daily activities around ambulatory care, these results support our previously proposed practical measure of the time burdens of cancer care—that any day with in-person healthcare contact may represent a ‘’lost day.”[Table: see text]
Bridging the gap: An integrated approach to transitions in care.
Authors: Allen Kathryn , Lightheart Erin , Kucharczuk Colleen R 
Published: October 2023

327 Background: Acute leukemia necessitates specialized care across multiple settings. Poorly executed transitions pose risks to quality and safety. Through the implementation of Lean Six Sigma methodology, we introduced an experienced APP (Advanced Practice Provider) known as the ‘Transitions Coordinator’ to collaborate with primary team, educate patients about disease/treatment plans, facilitate advanced care planning, and ensure smooth transition to post-acute outpatient care. Methods: The Transitions APP applies clinical guideline expertise to assess data, facilitate care coordination, and provide recommendations to the primary team. Other crucial aspects of the intervention encompass structured counseling sessions with patients to enhance health literacy, evaluation of patient values through advanced care planning, and a post-discharge phone call to verify understanding of instructions. The intervention concludes with a formal handoff process accompanied by thorough documentation. Results: Results show significant improvements post-intervention. The 30-day unplanned readmission rate decreased from 24.6% to 19.1%, surpassing the goal of 20%. The Serious Illness Conversation (SIC) rate increased from 11% to 92%, exceeding the 80% target. Staff perceptions of patient care improved, with increased confidence in follow-up care (2.7% to 29.2%) and patient support (12% to 41.5%). Patient experience ratings also indicated enhanced communication with doctors. Conclusions: Our intervention successfully addressed the challenges in acute leukemia care transitions. The integration of an APP Transitions Coordinator led to better communication, reduced readmission rates, and improved advanced care planning. This model can be applied to various patient populations with serious diagnoses requiring complex care. Lessons learned include the need for a customized approach and key elements such as education, advance care planning, discharge phone calls, and formal handoff processes. By bridging the gap between inpatient and post-acute care, we achieved better overall patient outcomes. This approach has the potential to benefit patients with other serious conditions like heart failure or chronic lung disease. Our experience highlights the importance of adapting the role to individual patient needs and ensuring timely delivery of necessary content.
Patient-reported outcomes (PROs) in patients (pts) with primary advanced or recurrent endometrial cancer (pA/rEC) treated with dostarlimab (D) plus carboplatin/paclitaxel (CP) compared with CP in the ENGOT-EN6/GOG3031/RUBY trial.
Authors: Mirza Mansoor Raza , Shahin Mark S. , Powell Matthew A. , Lundgren Caroline , Sukhin Vladyslav , Pothuri Bhavana , Gilbert Lucy , Gill Sarah , Ronzino Graziana , Nevadunsky Nicole Suzanne , Kommoss Stefan , Willmott Lyndsay , Boere Ingrid , Mathews Cara Amanda , Buscema Joseph , Teneriello Michael , Meyers Oren , Garside Jamie , Coleman Robert L. , Slomovitz Brian M. 
Published: October 2023

332 Background: In RUBY (NCT03981796), a phase 3, global, randomized, double-blind trial, D+CP demonstrated significant and clinically meaningful improvement in PFS vs placebo + CP (P+CP) in pA/rEC. Methods: 494 pts with pA/rEC were randomized 1:1 to D+CP or P+CP Q3W for 6 cycles (C), followed by D or placebo monotherapy Q6W for ≤2 y. EORTC QLQ-C30 and EN24 (prespecified secondary endpoints) were administered on day 1 of each C, at end of treatment (EOT), and at safety and survival follow-ups. Change (chg) from baseline (BL) to C7 (end of chemotherapy) and C13 (1 y) was calculated in the overall and mismatch repair–deficient (dMMR)/microsatellite instability–high (MSI-H) populations. Least-squares means (LSM) were generated using mixed models for repeated measures, adjusting for correlations across multiple assessments within a pt and controlling for BL global, pain, fatigue, and physical function (PF) scores. Results: In the overall population, PROs were similar with D+CP and P+CP through C7, and no differences between arms across the 3-y period were reported; mean chg from BL to EOT showed numerical improvement with D+CP in back/pelvic pain and deterioration with P+CP in global QOL/GHS, social function (SF), body image, and chg in taste. In the dMMR/MSI-H population, at C7, nominally significant improvements in QOL, PF, role function (RF), pain, and back/pelvic pain were seen with D+CP vs P+CP (Table). Conclusions: Dostarlimab+CP significantly improved PFS and maintained HRQOL in dMMR/MSI-H and overall populations, further supporting its use as a standard of care in pA/rEC. Clinical trial information: NCT03981796 .[Table: see text]
Symptom trajectory for patients utilizing remote symptom monitoring during gastrointestinal cancer treatment.
Authors: Diaz Bryanna , McGowen Chelsea , Caston Nicole E. , McElhany Sheila , McNair Carrie C , Kreitz Naden , Franks Jeffrey , Andrews Courtney J. , Huang Chao-Hui Sylvia , Odom James Nicholas , Weiner Bryan J. , Jackson Bradford E. , Basch Ethan , Stover Angela M. , Howell Doris , Rocque Gabrielle Betty , Young Pierce Jennifer 
Published: October 2023

345 Background: Use of electronic patient-reported outcome data allows patients to report symptoms in real time. This analysis aims to better understand the trajectory for symptoms reported via Remote Symptom Monitoring (RSM) by patients receiving gastrointestinal (GI) cancer treatment. Methods: This retrospective cohort study included patients initiating GI cancer treatment (chemotherapy, targeted therapy, and immunotherapy) between August 2022 and April 2023 at USA Health Mitchell Cancer Institute (MCI). Patients were eligible if they were starting a new treatment or had started treatment in the past 30 days. Patients received a weekly symptom survey over the course of 24 weeks through text message or e-mail. Patients were monitored for a total of 24 weeks regardless of their enrollment date. Patients reported symptoms as mild, moderate, severe, or very severe. All moderate and severe alerts were sent to the clinical nurse via the electronic medical record (EMR) to be acknowledged. After enrollment, health information including age, race, sex, zip code, ethnicity, cancer type, and cancer stage were extracted from the EMR. Descriptive statistics were calculated to examine frequencies of reported symptoms and their severity over time. Results: Of 75 GI patients approached, 63 patients (84%) were enrolled in RSM; 44% were female; 30% of patients were Black or African American, and median age was 65 (range 30-82). GI cancer types varied; Pancreatic (21%), Rectal (13%), Colorectal (14%), Colon (13%), Gastric (11%), Liver (11%), and other (17%). Over 24 weeks, 424 alerts were reported. Pain (31%), nausea and vomiting (21%), and decreased appetite (17%) were the most reported symptoms. 311 alerts were moderate (73%) and 113 were severe (27%). At week 0 (baseline; n = 63) 37 moderate alerts and 21 severe alerts were reported. At week 24 (final week; n = 63) 7 moderate alerts and 6 severe alerts were reported. Overall, there was a decreasing trajectory from week to week for moderate and severe alerts, with outliers noted at weeks 8 and 20. Conclusions: Findings suggest that RSM allows for an improvement in symptom trajectory for GI cancer patients based on the decrease in moderate and severe alerts reported from baseline to week 24. This decrease suggests that reported symptoms are being appropriately monitored and addressed by the patient's clinical care team due to improvement of symptoms or improvement of symptom management. Future research is needed to determine the benefits of prolonged RSM utilization by patient-reported quality of life as well as survival rate.
Cytogenetic risk explored within an electronic patient reported outcomes (ePROs) remote symptom monitoring platform among patients with acute myelogenous leukemia (AML).
Authors: Jamy Omer Hassan , Coombs Nicholas C , Beamon Emily R , Cherepanov Dasha , Galaznik Aaron , Rusli Emelly , Kristo Fjoralba 
Published: October 2023

349 Background: Patients with AML and poor-risk cytogenetic abnormalities often have suboptimal treatment response and poor long-term survival, Electronic Patient Reported Outcomes (ePROs) integration into routine oncology practice have been shown to improve patient time on therapy, survival, and resource utilization. This study explores the use of an ePRO platform to explore differences in treatment experience and ePRO compliance in patients with AML and poor and other-risk cytogenetics. Methods: Adult patients with AML undergoing treatment were enrolled in the Carevive remote symptom monitoring (RSM) platform between March 1, 2021 and April 20, 2023. Patients received baseline and weekly surveys to assess patient-reported symptom burden, physical function, overall health, and survey compliance throughout treatment. Baseline characteristics included age, sex, race, frailty status (modified Geriatric Assessment, CARE survey item, and/or self-reported activity level), comorbidities, and social determinants of health. Symptoms (derived from the PRO-CTCAE), physical function (PROMIS 4a), and quality of life (QoL) (EORTC QLQ-C30, items #29-30) were assessed weekly. Results were stratified by poor vs. other cytogenetic risk. As this was an exploratory study, statistical significance was not reported. Results: Of a total of 124 patients, 47 (38%) had poor-risk and 77 (62%) had other-risk disease by cytogenetics. Weekly survey compliance was comparable (68% vs 69%), and median age was 66 (range 35-88) and 69 (range 21-88), respectively. About 50% of all patients were male, 76% were White, and 69% had ≥1 comorbidity. Patients with other-risk were younger with 40% fewer comorbidities (mean 0.95, median 0, range 0-5) than patients with poor cytogenetic risk (mean 1.36, median 1, range 0-5). Overall symptoms were reported 12% more frequently among patients with other risk (1.49 symptoms per patient-week) compared to patients with poor risk (1.33 symptoms per patient-week). Fatigue was reported by 20% of patients across all patient-weeks for both risk groups; shortness of breath was reported 6% and 10% across all patient-weeks for poor and other risk groups, respectively. Although baseline treatment bother was 17% higher for poor risk patients, over time, QoL and treatment bother were comparable between both groups, and physical function was directionally higher. Conclusions: This study illustrates the feasibility of using remote symptom monitoring for evaluating patients with poor vs. other cytogenetic risk in routine care, with relatively high survey compliance in a real-world setting. Despite poor prognostic status, the experience of poor cytogenetic risk patients was comparable to other cytogenetic risk patients and reported directionally lower levels of symptom burden and higher levels of function over time.
Words matter: How clinical encounters can be unknowingly stigmatizing to some patient communities.
Authors: Gallagher Kathleen D. , Mukira Mary , Angove Rebekah SM 
Published: October 2023

356 Background: Lack of patient engagement around the content and approach to care conversations related to social determinants of health (SDOH) can negatively impact healthcare experiences and exacerbate disparities in outcomes. Lived environment, financial/logistical challenges, general access barriers and patient mistrust must be addressed on a systemic and individual level. Assumptions based on socioeconomic status, age, race, gender, and medical conditions can undermine communication and/or invalidate a patient's feelings and lived experiences. Accelerating the requirement of SDOH screenings without addressing the patient-centeredness of these conversations will likely contribute to health inequities and yield substandard patient experiences and outcomes. Methods: To better understand patient perspectives about language commonly used in SDOH screenings, we gathered views on terminology used towards patients through surveys, focus groups, and virtual workshops. Participants were recruited from a diverse pool of insured patients served by Patient Advocate Foundation representing various medical diagnoses, were lower income (<$48,000), racially/ethnically reflective of the US, and experienced healthcare access and/or affordability challenges. Results: Patients had both positive and negative perspectives on SDOH screening in clinical settings, specifically focused on communication, bias, and privacy. Survey/focus group results revealed the discomfort of financial and non-medical information (SDOH) being included in their electronic medical record (EMR). “It’s important to find words that are less stigmatizing because it affects how we see ourselves and others.” Only 21% reported being extremely comfortable with SDOH information being recorded in their EMR and subsequently being available to multiple members of their healthcare team. Judgement, embarrassment, shame, and lack of action (i.e., linkage to resources) were often cited as reasons for not wanting to have uncomfortable conversations. Patients also felt that disclosing this information could (or would) influence the treatment options offered, creating bias solely regarding their perceived ability to manage their medical and non-medical financial obligations. Conclusions: We uncovered how, without patient engagement, language and processes the healthcare system uses can feel biased and stigmatizing to those it is designed to help. Stigmatizing conversations can perpetuate discriminatory attitudes, influence clinicians' decision-making when treating a patient, and affect patient trust and disclosure within care settings. This cycle impacts quality of care and contributes to health disparities. By listening to patient perspectives, researchers and health care professionals can become more culturally aware and reduce stigmatizing language, while making care more patient-centric and inclusive.
Evaluating the patient reported reasons, challenges and outcomes of oncology second opinion.
Authors: Barrett William , Abuelgaslm Khadega , Damlaj Moussab , Jazieh Abdul-Rahman 
Published: October 2023

361 Background: Due to the disease complexity and life-threatening nature, many patients with cancer seek a second opinion (SO) pursuing the best help to navigate through their disease journey. In this study, we evaluated the reasons for seeking SO, challenges, and outcome. Methods: This is a cross section study using a 62-item questionnaire inquiring about patients’ demographics, reasons, challenges, comparison between primary specialists (PS) and SO specialists, and SO outcome. Patients with cancer diagnosis served at the collaborating institutions between January and November 2022 completed the survey either on paper copy or online via provided link to a SurveyMonkey form. Results: 425 surveys were sent, and 205 (48%) patients responded. Median age at diagnosis was 67 years (19-90), 80% were males, 93% were white and 36% had private insurance. A total of 137 (67%) sought a SO. The most frequent reason to seek SO was lack of confidence in treatment plan (52%). Recommendations of SO were different from PS recommendations in 48% of the cases. Predictors of seeking SO on a multivariate analysis (MVA) were diagnosis after 2015, having metastatic disease, and having private insurance. 54% of the those sought SO transferred care to other physicians, 43% to the ones who provided SO. The MVA of factors related to patient characteristics revealed that having genitourinary malignancies, metastatic disease, and private insurance were predictors of changing PS. Factors related to PS performance are depicted in Table 1. Conclusions: A high percentage of patients received SO changed their PS to the physicians who provided the SO. Empathy and confidence are essential to maintain the relation with physician. Social determinants of health such as insurance has significant impact on seeking SO and changing PS.[Table: see text]