bluuebunny/crossref_metadata_2025_split huggingface dataset:
Assessing the role of the quality and quantity of caregiver clinical participation on patient activation in the metastatic breast cancer setting.
Authors: Henderson Nicole , Bourne Garrett , Hendrix Emma , Thigpen Haley , Williams Courtney , Ingram Stacey A. , Odom James Nicholas , Triebel Kristen , Rocque Gabrielle Betty 
Published: October 2023

312 Background: Caregivers maximize health and quality of life of individuals undergoing treatment for cancer by assisting with daily activities, managing complex care, navigating health care systems, and communicating with health care professionals. In metastatic breast cancer (MBC), caregiver roles may be more extensive due to treatment trajectories. Little is known about how caregivers participate in clinical encounters and how their roles in treatment decision-making impact patient engagement. Methods: This mixed-methods analysis explored the effect of the quantity and quality of caregiver participation at clinical encounters in women with MBC. Participation quantity was measured by calculating proportion speaking time (seconds spoken/total appointment time) for oncologists, patients, and caregivers. A summative thematic content analysis using a constant comparative method was utilized to inductively identify caregiver roles during recorded appointments. Caregiver participation quality was then operationalized as the summed number of roles displayed (0-12). Patient participation quality was assessed using the Patient Activation Measure (PAM; scored 0-100 with higher scores indicating more activation) and compared to caregiver quantity and quality of participation using Spearman’s correlations. Results: Fifty-three clinical encounters with verbal caregiver participation were recorded. Patients had a mean age of 58 (SD 10) and were predominately white (72%); demographics of caregivers were not collected. On average, encounters lasted for 30 minutes (SD 12) during which oncologists spoke for 76%, patients for 20%, and caregivers for 4% of the encounter. Identified caregiver roles included: General Support; Management of Treatment or Medication; Treatment History; Decision-Making; Insurance or Money; Pharmacy; Scheduling; Travel Concerns; General Cancer Understanding; Patient Specific Cancer Understanding; Caregiver-Initiated or Emphasis on Symptom Severity; and Caregiver Back-Up of Patient Symptom Description. Caregiver quality scores averaged 5 roles (SD 3) and patients were highly activated (M=65, SD 16). Quality [r(53) = 0.349, p=0.010] and not the quantity [r(53) = 0.213, p=0.126] of caregiver contributions were associated with higher levels of patient activation. Conclusions: Although caregiver time speaking did not impact patient activation, the more ways that the caregiver productively participated in the clinical encounter, the more activated the patient was in their care. Greater integration of the caregiver into treatment decision-making appointments could help to encourage patient engagement when developing a treatment plan for MBC.
National service is free, not cancer disease: Financial toxicity in a public universal coverage healthcare system.
Authors: Russo Paola , Del Duca Francesca , Vitiello Grazia , Celentano Roberto , Martinelli Giuseppe , Musella Domenica , Parascandolo Ileana , Maddalena Antonio 
Published: October 2023

32 Background: Italian National Health Service provide regional control on clinical pathways to be cost-free. ASL Napoli 1 centralized model of Palliative Care Unit ensure free multidisciplinary medical and nursing assistance, beyond aids and devices. Since healthcare costs are rising and private spending is becoming necessary, our aim is screening financial toxicity in the most densely populated area in Europe. Methods: From January to April 2023 we performed simple random sampling to select 27 home care patients. From the richest neighborhoods to poorest ones, patients answered the COST-FACIT questionnaire. We collected information about medical history, sociodemographic characteristics (employment status or retired, family composition, if benefiting from state allowances) and, above all, out-of-pocket costs. Results: Data highlight that wealthiest and middle-class patients are afraid about out of control medical expenses and their satisfaction about economic status is declining. Patients from a lower socioeconomic background are deeply concerned about not being able to work and not being of financial support to often single income families. Score analysis reveals significant variation among the different items, and the average score is 12.4. Highest scores count 28 and 29, respectively, suggesting that these patients are more able to manage the costs of treatment or access financial resources to cope with medical expenses. Three scores of 0 suggest higher financial toxicity in the realm of palliative oncology care. These patients face greater difficulty in handling treatment costs, encounter barriers in accessing financial resources, or experience high expenses. Patients have highlighted that purchase of non-reimbursable drugs is the most onerous out-of-pocket cost in home care setting. Conclusions: Our centralized Palliative Care Unit organizational model coordinates by adapting purchasing and providing holistic sanitary approach beyond patients' economic abilities. Our centralized Palliative Care Unit provides health services to endure equity across all the city. However, score analysis suggests a range financial suffering for home care patients. Low average score 12.4 suggests how much financial suffering in palliative care impacts, even in a model of centralization of health care with global coverage. So, screening for financial toxicity plays a key role in directing health policies on pharmaceutical expenditure.
A survey-based assessment of internet and social media use by oncology patients and their caregivers for health-related education.
Authors: Burkenroad Aaron , Zektser Yuliya , Cohen Melissa J. , Ashouri Shay , Kaul Anita , Slomowitz Samuel , Anand Sidharth 
Published: October 2023

321 Background: Oncology patients are increasingly utilizing the internet and social media (SM) as sources of health-related information. Contemporary information on oncology patient use patterns for health-related education is not well understood. To address this gap, we surveyed adult oncology patients on active treatment seen in a community-based oncology clinic about their use of the internet and SM around cancer-specific content. Methods: We conducted a qualitative, cross-sectional anonymous survey to understand the range of values, perspectives, and behaviors that patients and caregivers have around their use of internet and SM resources. We also assessed patient beliefs regarding the quality of education provided by their oncologists and how this may relate their patterns of use of these resources. Results: Of the 40 patients surveyed: 55% were male, 64% identified as Caucasian, 22% Latino, 14% were of other races, and 81% spoke English as their primary language. The group represented a diverse age range and education level and a variety of solid and hematologic malignancies. Most participants (89%) reported receiving written educational materials by their oncologist and 58% reported receiving links to electronic/internet resources for disease education.The vast majority of patients (95%) had a positive opinion of in-person education provided by their oncologist and 75% were satisfied with the quality of written or online resources provided. The majority of patients (85%) reported using the internet to learn about their diagnosis and treatment. A smaller proportion (43%) of patients used SM platforms. Of internet information sources used, the patient’s own health system website was the most popular choice (41.7%). Interestingly, 87% found resources without specific guidance from their oncologist. Notably, 11% of patients were instructed by their oncologist to avoid researching their diagnosis online. Conclusions: Our research shows that internet and SM use among patients with cancer is ubiquitous, and independent of the educational interventions provided by their oncologists. Importantly, 66% of participants felt that online research helped them feel more prepared for discussions with their oncologists. A quarter (25%) of patients agreed that they only use online resources recommended by their oncologist’s office, suggesting that the majority of patients will pursue their own research in a self-guided fashion. Encouragingly, the majority of patients (86%) reported that they feel comfortable discussing information they find online with their care provider. Improved understanding in this area will help oncologists better guide their patients to reliable resources and engage more directly in the patient or caregiver’s process of seeking cancer-specific information from outside sources.
Projected population mortality reduction from liquid biopsy screening approaches: High sensitivity screening for focused cancer types and populations—High specificity screening for broad cancer types and populations.
Authors: Bach Peter Brian 
Published: October 2023

33 Background: There are two distinct ‘liquid biopsy’ cancer screening approaches. Focused testing for selected cancers where screening is recommended but not being received, in which test sensitivity can be prioritized as false positives reflex to standard of care screening. Broad testing for many cancers where false-positives necessitate high test specificity, typically at the expense of sensitivity. The public health impact and testing burden of these approaches has not been explored. Methods: Projected cancer deaths averted and annual number of tests performed based on published performance and target populations for liquid biopsy tests with published data. Focused screening modeled for patients who are not receiving guideline-recommended screening for lung, liver and colorectal cancer. Broad screening modeled for all individuals aged 50-80 and assumed to detect all cancer types. Averted deaths determined by combining the mortality reduction associated with screening (published literature, 20% if no literature); adjusted for reported prospective test sensitivities: focused (85%), broad (28%). Only individuals not receiving a particular cancer screening could have liquid biopsy avert a death for that cancer. Results: Focused and broad screening strategies each prevented approximately 20,000 cancer deaths annually. Focused screening required testing one-fifth as many people annually as the broad testing approach (30MM vs.150MM). All of the projected reduction in mortality associated with focused testing was based on randomized studies; for the broad strategy the equivalent statistic was 53%. Conclusions: Cancer deaths can be reduced equivalently through focused cancer screening at high sensitivity and broad cancer screening at high specificity at one-fifth the testing burden. The impact of false positives in the focused testing approach and false reassurance in the broad testing approach might alter these findings, which could also be affected by the cost of testing and follow-up. [Table: see text]
Patient-centered collaborative research: Exploring perspectives on clinical meaningfulness in metastatic breast cancer with clinicians, patients, and caregivers.
Authors: Graff Stephanie L. , Freeman Emily C. , Roach Meaghan , Wilson Rozanne , Stemland Jeanne , Chan Rebecca J. , Wochal Paulina , Katz Julie , May Suepattra G. 
Published: October 2023

338 Background: In metastatic breast cancer (mBC), treatment decision-making is informed by many factors including patient values, preferences, and care goals. Important to treatment decision-making is clinical meaningfulness, or the degree to which a treatment for mBC results in a meaningful change in the patient’s daily life, and clinically meaningful outcomes that are relevant to patients (e.g., survival, quality of life). However, patient and clinician perspectives and alignment on these concepts have not been well elucidated. Engaging patients and other key stakeholders as research collaborators is vital to guiding the delivery of high-quality cancer care focused on outcomes that patients considered meaningful. The aim of this work is to describe the implementation of an innovative multi-collaborator engagement with patient advocates and professional oncology societies to support a study examining perspectives on clinical meaningfulness in mBC treatment among clinicians, patients, and caregivers in the United States. Methods: This mixed-methods study utilizes qualitative semi-structured in-person and virtual focus groups to inform the development of collaborator-specific surveys on clinical meaningfulness in mBC. A multi-collaborator engagement approach was selected to support the conception, implementation, and completion of this study. Specifically, we have convened a collaboration with patient advocacy groups and professional membership organizations to engage researchers, patients, caregivers, and clinicians. The collaboration is designed to: i) facilitate the development of study protocols and key data collection documents; ii) review and reflect on findings and salience for relevant populations; and iii) participate in dissemination activities whereby collaborators co-create, co-present and discuss findings and their impact on clinical practice. Results: To date, we have partnered with four breast cancer patient advocacy groups representing sociodemographic diverse constituencies throughout the US and three oncology professional membership organizations. By describing how to implement these partnerships, we seek to present a collaboration roadmap that can be replicated and adapted to similar studies in oncology care delivery. Such a comprehensive and rigorous approach aims to enhance the quality of data collection and interpretation, generating evidence that will optimally improve patient-centered mBC care delivery and meaningful patient outcomes. Conclusions: Engaging patients and other key collaborators in research is important to generate clinically meaningful evidence to those involved in mBC treatment decision-making. This study offers a robust methodological approach for gaining insights into the delivery of patient-centered cancer care.
Health insurance literacy among patients receiving outpatient cancer treatment.
Authors: Zhao Jingxuan , Zhang Nan , Hilal Talal , Griffin Joan M. , Yabroff Robin , Khera Nandita 
Published: October 2023

339 Background: Limited health insurance literacy (HIL) has been linked to problems paying medical bills or delaying care among patients with cancer. In this study, we describe the prevalence and correlates of HIL in a cohort of cancer patients measured using a ten-question HIL quiz developed by the Kaiser Family Foundation. Methods: We examined HIL in 393 adult patients (aged >18 years) receiving cancer treatment in two ambulatory infusion centers, Mayo Clinic in Phoenix, Arizona (12/2019 to 2/2020 and 8/2020 to 10/2020) and University of Mississippi Medical Center in Jackson, Mississippi (9/2020 to 1/2021). HIL was categorized as low, moderate, or high based on the total number of correct answers: 0-4 (low), 5-6 (moderate), and 7-10 (high). Descriptive statistics characterized the sample and chi-square statistics compared HIL by sociodemographic factors. Results: Most patients understood basic insurance terms, such as premiums and deductibles (Table). However, fewer patients answered questions correctly about provider networks (46.1%), formularies (48.6%), and calculating out-of-pocket (OOP) spending (16.8%). 53 (13.5%), 69 (17.6%), and 271 (69.0%) patients had low, moderate, and high HIL scores, respectively. Lower HIL was more common among patients of younger age (<65 years: 17.8%, 65+ years: 8.7%), lower educational attainment (less than college: 23.2%; college or higher: 4.4%), and lower household income (<$4999: 21.1%, $5000+: 6.1%) (all p-values<0.05). Conclusions: Although HIL in our cohort of cancer patients was relatively high - 69% answered at least 7 questions correctly - there were gaps in understanding of provider networks, formularies, and calculation of OOP spending. Efforts to improve HIL and help with navigation of health insurance plans may be required, especially for socioeconomically vulnerable patients.[Table: see text]
Frequency of standardized patient-reported outcome measures in routine clinical care of patients with cancer.
Authors: Bone Robert , Jeune-Smith Yolaine , Feinberg Bruce A. 
Published: October 2023

342 Background: Patient-reported outcomes (PROs) assess a patient’s self-reported health status, including disease symptoms, treatment experience, functional outcomes, and quality of life. Incorporation of PROs has been linked to improved patient symptom control and increased shared decision making. Standardized PRO measures (PROMs) are becoming more frequent as an endpoint for clinical trials, however their use is less frequent in routine care for patients with cancer. The goal of this study was to assess the utilization of PROMs and identify barriers to their use. Methods: US-licensed oncologists/hematologists convened at one of three live meetings in 2023 to review recent clinical updates. Respondent demographics were collected ahead via an online survey. During the meetings, participants responded to queries on their use and perceptions of PROs and PROMs. Responses were captured via audience response system technology; not all participants answered every question. Pooled data were summarized using descriptive statistics. Results: Of the 146 respondents, 77.4% self-identified as community-setting providers, spent 84.3% of their time seeing patients, saw an average of 19.8 patients/day, and averaged 17.7 years of experience. Respondents found PROs to be most useful in early detection/management of treatment toxicities and symptoms (63.8%) and tailoring of clinical/supportive care (56%). The majority of PROs are typically recorded through informal verbal inquiries, while 18.1% and 10.9% of respondents use validated and non-validated PROMs, respectively. Few respondents (11.3%) administer PROMs to every patient at every visit, while over one-third (38.3%) never administer PROMs. Within the practice, medical assistants and nurses are most likely to be the provider administering PROMs. PROMs are most commonly administered when the patient is in the office and are infrequently administered through other means. Lack of time to administer or review PRO surveys (45.1%), and lack of reimbursement (38.9%) and EMR integration (38.9%) were the most common reported barriers to using PROMs in the respondents’ practices. Conclusions: Despite the majority of respondents finding PROs useful in practice, a minority use formal measures to record PROs. Further, usage is infrequent across patient visits. Lack of time, lack of reimbursement, and logistic barriers are the most common reasons for not using PROMs in routine care. These barriers may be overcome by efforts or guideline changes from regulatory agencies, payors, or clinical guideline organizations. Future work will assess how physicians are using PROMs in treatment selection for their patients with cancer.
Assessing the validity and feasibility of using a best-worst scaling measure for values elicitation among older adults with newly-diagnosed blood cancers to inform treatment decisions.
Authors: Richardson Daniel R. , Mhina Carl J , Washko Matthew F. , Deal Allison Mary , Cole Amy C. , Kwong Elizabeth C , Adapa Karthik , Crossnohere Norah L , Bridges John F.P. , Wheeler Stephanie B. , LeBlanc Thomas William , Bennett Antonia V. 
Published: October 2023

344 Background: Multiple stakeholders have called for the development of tools to facilitate values elicitation with patients to inform treatment decision making about chemotherapy. We previously developed a best-worst scaling (BWS) measure, a theory-driven values elicitation tool, for older adults (≥ 60 years) with blood cancers through patient and expert engagement. We sought to evaluate the feasibility and validity of using this measure to inform initial treatment decisions for newly-diagnosed patients. Methods: We completed a convergent mixed-methods study to test feasibility and validity of remote delivery of the measure following guidance for choice experiments (Janssen, Exp Rev Pharm Out Res, 2017). Convergent validity was evaluated by comparing preferences with a ranking exercise. Content validity was tested in cognitive interviews. Results: 178 patients at a public safety net hospital were eligible, 157 (88%) were approached, and 48 (31%) consented (48% lymphoma, 40% leukemia/myelodysplastic syndrome, 12% other). Mean age was 73.9 years (range 60 - 95). 59% were male; 96% were white; 67% had a bachelor’s degree or higher. 52% completed the BWS measure prior to their initial treatment visit. Patients agreed or strongly agreed that the instrument was understandable (96%), relevant to them (58%), and showed their real preferences (75%). 50% felt it was easy to answer. 54% of responses from the BWS measure were concordant with ranking on their top priority. Cognitive interviews (n=7) demonstrated content validity: all patients were able to accurately describe the instructions of the BWS instrument and correctly define each included outcome; most patients reported that the BWS instrument helped solidify their preferences; all patients reported it was beneficial; no patients reported missing domains of outcomes; all reported that the time and emotional burden to complete the measure were appropriate. Conclusions: Using this BWS measure to inform treatment decisions of older adults with newly-diagnosed blood cancers is feasible and appears valid for clinical use. Future work is needed to optimize implementation and validate the measure in different settings and with a larger and more diverse population.