bluuebunny/crossref_metadata_2025_split huggingface dataset:
Reimaging metastatic breast cancer care delivery: A patient-partnered qualitative investigation.
Authors: Roberson Mya L , Woods Joshua S , Glenn Lesley , Maues Julia , James Deltra , Reid Sonya A. , Elmore Shekinah Nefreteri Cluff 
Published: September 2022

259 Background: Treatment advances for metastatic breast cancer (MBC) have markedly increased survival over the last several decades. Despite the clinical innovation that has occurred, there remains substantial fragmentation of care and lack of focused attention on MBC survivorship care. This study partnered with Project Life, an MBC-survivor led patient wellness community to assess MBC patient experiences with treatment experiences and social support services. Methods: We conducted, virtual, in-depth semi-structured qualitative interviews among people who were members of the Project Life Wellness community. The interview guide and study materials were developed in collaboration with Project Life leadership. A study flyer was distributed by Project Life to members that included a link to an eligibility survey. Participants were eligible if they self-identified as having MBC, were a member of the Project Life community, and could complete the interview in English. As part of the interview, we asked, “How would you re-imagine medical care for people with metastatic breast cancer?” We then systematically processed responses with phronetic iterative analysis, using the mixed-methods research software MAXQDA, to uncover contextually grounded, emergent themes through synthetic coding. Results: We interviewed 36 women with MBC who were members of the Project Life Wellness Community in Spring 2022. In terms of age, 8 (22%) participants were 30-45, 15 (42%) were 46-59, and 13 (36%) were 60+. Overall, 22% of participants identified as people of color (Black, Latina, or Asian). In response to how they would reimagine MBC care delivery, all participants touched upon dimensions of care coordination. Aspects of care coordination that participants specifically raised included 1) Organized referral processes for non-oncology care like mental health services, sexual health care, and palliative care; 2) The need for MBC-specific support services within the care setting; 3)Patient connection to psychosocial aspects of care including social work and patient navigation; 4) Streamlined processes for identifying and enrolling in clinical trials. Conclusions: In our investigation, when asked how they would reimagine MBC care delivery, participants overwhelmingly endorsed the need for more care coordination along several key domains. Responses highlighted the unique needs of care coordination specific to MBC patients. Future care innovations should center patient voices to ensure optimal impact.
Health insurance coverage patterns before and after a cancer diagnosis: Findings from adult patients with cancer in an integrated health system.
Authors: Banegas Matthew P. , Dickerson John F. , Petrik Amanda F. , Anderson Melissa L. , Ramaprasan Arvind , Keast Erin , Wallace Jamie , Henrikson Nora B. 
Published: September 2022

262 Background: Patients diagnosed with cancer experience intense medical care and high costs associated with the disease and its treatment. As a result, patients may consider changes to their health insurance coverage to adjust the medical benefits covered and/or the cost-sharing (e.g., annual maximum out-of-pocket [MOOP] limit) requirements. The purpose of this study was to assess the patterns of health insurance plan coverage patterns prior to and following a diagnosis of cancer among adult patients. Methods: Data from 13,237 patients aged ≥18, enrolled at Kaiser Permanente Northwest, diagnosed with cancer between Jan. 1, 2016–March 31, 2021 [index cancer], with ≥12 months of continuous health insurance coverage pre-cancer diagnosis were included. Patients enrolled in hospice prior to index cancer were excluded. Health insurance coverage outcomes included (1) coverage patterns (maintenance, interruption, termination, switch); (2) a composite of any coverage changes; and (3) cost-sharing patterns. Monthly health plan membership enrollment data was used to assess outcomes between two time periods: pre-diagnosis (12 months prior to index cancer) and post-diagnosis (12-18 months following index cancer). Patient sociodemographic, enrollment, health plan and clinical data were extracted from the electronic health record (EHR). Descriptive statistics were used to assess outcomes. Results: Approximately 40% of patients were ages 18-64, 54% were female and 9% were non-White. At index cancer diagnosis, 60% of patients had Medicare, 37% had a commercial plan and 3% had Medicaid. Among patients aged 18-64, 62% had any change in health insurance coverage between pre- to post-cancer diagnosis, including 41% who switched plans, 19% who terminated and 2% with an interruption. Among patients aged 65+, 50% of patients had any change in health insurance coverage, including 20% who switched plans, 30% who terminated and < 1% with an interruption. For those who switched plans between the pre- to post-diagnosis periods, the most common patterns included switching out of commercial plans (-11% points) and switching into either Medicare (+9% points) or Medicaid (+5% points). Among all patients, 14% changed to a higher cost-sharing plan (difference in mean individual, in-network MOOP limit: $938) and 10% changed to a lower cost-sharing plan (difference in mean individual, in-network MOOP limit: -$1701). Conclusions: Our novel findings provide valuable information about health insurance plan coverage patterns among adults diagnosed with cancer and suggest a large proportion of patients may undergo changes to their health insurance coverage. Future studies that assess the implications of health insurance changes on care access and cancer outcomes are warranted.
Sociodemographic difference in patients who enroll and decline remote symptom monitoring (RSM).
Authors: Hildreth Keyonsis , Caston Nicole E. , Dent D'Ambra , Ingram Stacey A. , Lalor Fallon , Franks Jeffrey , Azuero Andres , Young Pierce Jennifer , McGowen Chelsea L. , Andrews Courtney J. , Huang Chao-Hui , Dionne-Odom James Nicholas , Weiner Bryan J , Jackson Bradford E. , Basch Ethan , Stover Angela M. , Howell Doris , Rocque Gabrielle Betty 
Published: September 2022

268 Background: Remote symptom monitoring (RSM) using patient-reported outcomes has been shown to reduce symptom burden and hospitalizations in clinical trials. However, little is known about how willing patients are to participate in remote symptom monitoring in real-world settings, particularly for vulnerable patient populations. This study aims to compare characteristics of cancer patients enrolled vs. patients who declined enrollment into RSM. Methods: This prospective study used data that assessed the characteristics of patients who enrolled vs. patients who declined enrollment into RSM. Inclusion criteria included participants’ age ≥18 with cancer who received chemotherapy, targeted therapy, or immunotherapy at the University of Alabama at Birmingham. Race and ethnicity (Black or African American, White, Asian, other and unknown), sex, cancer type (breast, gastrointestinal [GI], genitourinary [GU], gynecological [GYNX], head and neck, leukemia, lymphoma, melanoma, myeloma and other), urban/rural residence, Area Deprivation Index (ADI), and insurance type (Medicaid, Medicare, none, other and private) were abstracted from electronic medical records (EMR) and PRO platform (Carevive). Descriptive statistics were calculated using frequencies and percentages for categorical variables and medians and interquartile ranges for continuous variables. Differences in enrollment status characteristics were calculated using measures of effect size such as Cramer’s V. Results: Of the 307 patients, two thirds of patients were female (71%); 25% were Black or African American and 66% were White patients; 15% lived in an area of higher disadvantage. For insurance, 46%, 26%, 10%, 8%, and 9% of patients had Private, Medicare, Medicaid, other insurance, and no insurance, respectively. The proportion of patients who declined enrollment was higher for males than females (22% vs. 10%), Black or African American than White (18% vs 13%); and having Medicare than private insurance (22% vs. 10%). Compared to those who enrolled, patients who declined enrollment were more often to be male (V:0.2), Black or African American (V:0.1); and have Medicare insurance (V:0.2). Patients enrolled vs. declined in RSM had similar ADI scores (V:0.01). Conclusions: This study demonstrates that potentially vulnerable patients, including Black patients and those with public insurance, have lower RSM engagement. Future analysis is needed to understand participation barriers and how to better engage diverse populations to ensure optimal healthcare delivery to all patients.
Integration of patient-reported outcomes into survivorship care.
Authors: Gilmore Katherine Ramsey , Chapman Patricia Hansberry , Rollins Johnny , Lee-Kim Soo , Robinson Justine , Mullen Ellen , Mistry Haleigh , Singh Prachee , Coyne Robin , Nelson Ana , Osai William , Stolar Karen , Knippel Susan , Fournier Danielle M. , Plair Tamera , Peek Angela , Rodriguez Maria Alma 
Published: September 2022

271 Background: Patient reported outcomes (PRO) can be valuable clinical tools to embed the voice of patients into the clinical experience. The use of PROs in the context of cancer survivorship is relatively under-explored. Methods: Disease-specific modules of the MD Anderson Symptom Inventory (MDASI) PRO were integrated into the electronic health record (EHR), and distributed 3-7 days prior to survivorship clinic visits through the patients’ EHR portal. Patients with virtual visits were called 24 hours prior, instructed how to video link, and how to complete the MDASI PRO. For patients who completed the PRO electronically, results were reviewed during clinic visit. High symptom alerts (> = 7) for four key symptoms were established and triggered an automatic message to care teams for review. Results: From Sept 1, 2020 – August 31, 2021, 2,196 PRO surveys were sent to patients with 1,268 submitting results (57.74%) (see Table). Within specific clinics, the submission rates varied greatly between in-person and virtual appointments (33% vs. 83%). Submission rates varied by clinics, with responses ranging from 28.57% - 73.59%. Clinics with higher overall rates had a higher proportion of virtual visits. Conclusions: Electronic distribution of PROs can be successfully integrated into long term survivorship clinic visits. Virtual visits had overall much higher PRO response rates, due to pre-visit workflows which encouraged the completion of PROs. We conclude that patient education and real time support is needed to facilitate patients’ completion of PRO surveys through the electronic portal.[Table: see text]
Adaptation of remote symptom monitoring using electronic patient-reported outcomes for implementation in real-world settings.
Authors: Dent D'Ambra , Ingram Stacey A. , Caston Nicole E. , Thigpen Haley , Lalor Fallon , Jamy Omer , Giri Smith , Azuero Andres , Young Pierce Jennifer , McGowen Chelsea L. , Daniel Casey L. , Andrews Courtney J. , Huang Chao-Hui , Dionne-Odom James Nicholas , Weiner Bryan J , Howell Doris , Jackson Bradford E. , Stover Angela M. , Rocque Gabrielle Betty 
Published: September 2022

272 Background: Despite evidence of clinical benefits, widespread implementation of remote symptom monitoring has been limited. We describe a process of adapting a remote symptom monitoring intervention developed in a research setting to a real-world clinical setting at two cancer centers. Methods: This formative evaluation assessed core components and adaptations to improve acceptability and fit of remote symptom monitoring using Stirman’s Framework for Modifications and Adaptations. Implementation outcomes were evaluated in pilot studies at the two cancer centers testing technology (Phase I) and workflow (Phase II and III) using electronic health data; qualitative evaluation with semi-structured interviews of clinical team members; and capture of field notes from clinical teams and administrators regarding barriers and recommended adaptations for future implementation. Results: Core components of remote symptom monitoring included electronic delivery of surveys with actionable symptoms, patient education on the intervention, a system to monitor survey compliance in real-time, the capacity to generate alerts, training nurses to manage alerts, and identification of personnel responsible for managing symptoms. In the pilot studies, while most patients completed > 50% of expected surveys, adaptations were identified to address barriers related to workflow challenges, patient and clinician access to technology, digital health literacy, survey fatigue, alert fatigue, and data visibility. Conclusions: Using an implementation science approach, we facilitated adaptation of remote symptom monitoring interventions from the research setting to clinical practice and identified key areas to promote effective uptake and sustainability.
Patient-reported hope, quality of life, symptom burden, coping, and financial toxicity in early-phase clinical trial participants.
Authors: Lundquist Debra , Pelletier Andrea , Durbin Sienna , Bame Viola , Turbini Victoria , Lynch Kaitlyn , Johnson Andrew , Heldreth Hope , Healy Megan , McIntyre Casandra , Juric Dejan , Jimenez Rachel , Ferrell Betty R. , Nipp Ryan David 
Published: September 2022

275 Background: Early phase clinical trials (EP-CTs) investigate novel treatment options in oncology, with recent advances in personalized therapy leading to improved outcomes and offering hope to patients with cancer. However, little research has sought to understand associations of patient-reported hope with quality of life (QOL), symptom burden, coping, and financial toxicity in EP-CT participants. Methods: We prospectively enrolled consecutive adults with cancer participating in EP-CTs at Massachusetts General Hospital from 04/2021-05/2022. Participants completed baseline surveys prior to treatment initiation that assessed hope (Herth Hope Index [HHI], higher scores indicate greater hope), QOL (Functional Assessment of Cancer Therapy-General), symptom burden (physical: Edmonton Symptom Assessment System [ESAS]; psychological: Patient Health Questionaire-4 [PHQ4]), coping (Brief COPE: self-blame, acceptance, denial, emotional support, active, behavioral disengagement), and financial toxicity (COST tool, higher scores indicate greater financial wellbeing). We used regression models to determine associations of hope scores with patient-reported QOL, symptom burden, coping, and financial toxicity. Results: Of 157 eligible patients, we enrolled 129 (enrollment rate 82.2%, median age = 62.5 years [range 33.0-83.0], 53.9% female, and 96.0% metastatic cancer). Most common cancer types were gastrointestinal (37.5%), breast (20.3%), lung (8.6%), and head and neck (7.8%). Patients had an average HHI score of 27.5 (range 15.3 – 36.0), with 30.5% reporting high levels of hope. We found associations of higher hope scores with better QOL (B = 0.24, p < 0.001) and lower symptom burden (ESAS-physical: B = -0.14, p < 0.001; PHQ4-depression: B = -2.07, p < 0.001; PHQ4-anxiety: B = -0.93, p = 0.001). We also found that hope scores were associated with patients’ coping (self-blame [B = -1.44, p < 0.001]; acceptance [B = 1.40, p < 0.001], denial [B = -1.12, p = 0.004], emotional support [B = 0.99, p < 0.001], active [B = 1.02. p = 0.001], behavioral disengagement [B = -2.52, p < 0.001]). Lastly, we found that higher hope scores were associated with greater financial wellbeing (B = 0.11, p = 0.026). Conclusions: In this prospective cohort study, we demonstrated a substantial proportion of EP-CT participants had high baseline hope and identified associations of hope scores with other important patient-reported outcomes. Specifically, we found novel associations of higher hope scores with better QOL, lower symptom burden, more adaptive coping mechanisms, and greater financial wellbeing, underscoring the importance of targeting these patient-reported outcomes when seeking to enhance the care experience of EP-CT participants.
Assessment of Spanish hospitals involved in the Quality Oncology Practice Initiative program.
Authors: Garcia-Foncillas Jesus , Lopez Rafael , Camps Carlos , Guillem Vicente , Alonso Jose Luis , Carrato Alfredo , Martín Nicole , Paz-Ares Luis G. , Provencio Mariano , Esteban Emilio , Ayala Francisco , Pérez-Segura Pedro , Narbona Javier , Bayo Juan L. , Bessa Maria , Gratal Paula 
Published: September 2022

305 Background: Measuring and tracking quality of care is highly relevant in today’s healthcare. The Quality Oncology Practice Initiative (QOPI) program is a referral for evaluating oncology practices worldwide. The ECO Foundation (Excellence and Quality in Oncology), a collaboration of oncology experts from the major Spanish hospitals involved in cancer treatment, reached an agreement with ASCO (American Society of Clinical Oncology) to include Spanish hospitals in its QOPI program. Methods: We analyzed the scores of the QOPI rounds from 14 Spanish hospitals, which submitted their charts from 2016 to 2021, and the measures obtained from 2018 to 2021, regarding the core/symptom, breast, colorectal (CRC) and NSCLC modules, in comparison with the QOPI aggregate measures. Results: Since 2016, 14 Spanish hospitals have participated in the QOPI program, achieving the certification 12 of them, and 3 are in process. Along the years, they have obtained a score over 85%, being 87,41% the worse in 2021, and 92,80% the best in 2020. We also analyzed the outstanding measures from 2018 onwards. The highest scores in Spanish hospitals were for information of infertility risks and chemotherapy intent prior to prescription, and documented plan for oral chemotherapy. However, measures regarding pain addressed, appropriate antiemetic therapy for high- and moderate-emetic-risk antineoplastic agents and action taken to address problems with emotional well-being by the second office visit, were among the lowest scored measures. When we focused in breast and NSCLC modules, Spanish hospitals didn´t show negative values, highlighting in the administration of Tamoxifen or AI within 1 year of diagnosis by patients with AJCC Stage IA (T1c) and IB - III ER or PR positive and in the status documentation for patients with initial AJCC Stage IV or distant metastatic NSCLC. In CRC module, Spanish hospitals showed lower scores in colonoscopy before or within 6 months of curative colorectal resection or completion of primary adjuvant chemotherapy. Conclusions: This study evaluates QOPI scores in Spain, showing that repeated participation enhances quality of care, although there is room for improvement. ECO Foundation will continue supporting Spanish practices to increase their participation aiming of improve oncology care in Spain.
Measuring integrated team-based oncology care: Developing a novel chart abstraction tool.
Authors: Richardson Robin , Schear Rebekkah , Munoz Rebecca , Kvale Elizabeth Ann 
Published: September 2022

316 Background: In December 2018, the Livestrong Cancer Institutes (LCI) launched the CaLM Model of Whole-Person Cancer Care. Compared to traditional models of oncology care, CaLM offers integrated interdisciplinary supportive care. As team-based care delivery models like CaLM begin to become more predominant, health IT infrastructure and systems are failing to adequately capture and measure simple clinical data on team-based encounters. Athena, our EHR, lacked discrete fields to capture necessary data from shared appointments in order to evaluate patient utilization of team-based longitudinal care; requiring us to develop a manual chart abstraction to evaluate the clinical model. Methods: We performed a literature review and environmental scan on chart abstraction for team-based care. When limited results were found, we sought to develop a novel tool in REDCap. We developed a list of variables and domains that required measurement and worked with IT to determine which, if any, could be generated automatically in reports in the Athena EHR. Remaining domains (12 domains and 151 unique data points) were strategically embedded in a methodological abstraction tool that mapped closely to the logic and flow of the EHR. We tested the tool and iterated over three months in 2019. Before abstraction began, we developed and executed a two module, four hour training for data collectors to ensure quality data collection. Over a one year period, four abstractors pulled data from over 400 individual patient charts in the EHR. Results: We developed a unique two-phase quality assurance (QA) algorithm. Phase 1- We randomly selected 10% of patient records; two abstractors completed dual data entry (same chart). Dual data entry controls for discrepant values that can be common in large datasets. A third-party team reviewed both charts, recording discrepancies by category, harmonizing charts, and data was used to retrain data collectors during weekly meetings. Highest discrepancies occurred when documenting treatment history (95%). For 89% of records, there were differences in psychosocial utilization. As a result of these discrepancies, we opted to extend QA- the remaining 90% of records were reviewed by third party scanning half of domains for accuracy. The chart abstraction was successfully completed on over 400 patient charts; the process took over 18 months to complete. Conclusions: Analyzing patters of team-based care is likely a manual process, regardless of EHR vendor. Our tool is well-structured with the ability to be open source, so that other clinics can utilize our tool in lieu of replicating the same painstaking process.