bluuebunny/crossref_metadata_2025_split huggingface dataset:
Postoperative symptom monitoring with ePROs in an academic public hospital.
Authors: Mody Gita N , Thompson Jillian C , Williams Brittney M , Shrestha Sachita , Bryant Mary-Catherine , Bright Annie , Nevison Julia , Cox Chase , Perez Miriam , Newsome Bernice , Hill Lauren , Deal Allison Mary , Jonsson Mattias , Long Jason M , Haithcock Benjamin E. , Stover Angela M. , Bennett Antonia Vickery , Basch Ethan 
Published: September 2022

264 Background: Postoperative symptom burden is high in surgical oncology patients. Electronic patient-reported outcome (ePRO) remote monitoring systems are rapidly proliferating and have the promise of improving care. However, implementation in diverse practice settings is understudied. More information on ePRO participation may determine addressable barriers. Methods: Patients presenting to the Multidisciplinary Thoracic Oncology Program for surgery were prospectively enrolled. ePROs assessing common postop symptoms and functional impairments were administered via a web-based platform daily for 14 days and then weekly until 3 months post-discharge. Automated reminders were provided by email. Phone calls were made for 2 consecutive missed ePROs. ePRO participation levels were categorized as high (> 80%), medium (50-80%), low (1-49%), and none. Patient characteristics were examined by participation level via Fisher’s exact and Kruskal-Wallis tests. Results: From 2020-2022, 202 patients were recruited to participate, and 113 (56%) agreed. There were no differences in demographics of agreed vs. declined. 99 patients initiated ePROs after discharge. Mean age was 60.5 years (sd 13.4), 37.8% were male, 72.5% were White, and the majority (64%) had lung resection. Patients participated in ePROs for an average of 82 days (sd 24) before discontinuing. Overall, 57.7% (1383/2397) of delivered surveys were completed; response rates were lowest in week 1 (48%) and highest in week 7 (71%). Participation levels are described in Table. Married/partnered patients were significantly more likely to have high levels of participation (p = 0.003), and those who regularly used a computing device almost reached significance (p = 0.057). Age, gender, race, employment, email/internet use, financial status, and quality of life did not vary across ePRO participation levels. Conclusions: Monitoring symptoms with ePROs after discharge from thoracic surgery is feasible in a large academic public hospital. Participation levels in ePROs are lower immediately after discharge, when symptomatic complications drive the highest rates of readmissions. This suggests an opportunity to improve ePRO implementation during the post-acute period when intensive monitoring is desired and in patients who are not partnered or are less frequent device users. As length of stay and readmissions are increasingly targeted for expenditure reduction in academic inpatient settings, it is paramount to design and implement systems to effectively monitor at-risk patients. Clinical trial information: NCT04342260. [Table: see text]
Who is most satisfied with their experience? A systematic approach to an equitable patient experience.
Authors: Donohue Caitlin C , Eng Kelly , Ferzoco Maria , Kadish Sarah , Contreras Magnolia , Wagner Andrew J. , Hahn William C. , Lathan Christopher S. 
Published: September 2022

265 Background: In 2019, Dana-Farber Cancer Institute (DFCI) conducted exploratory quantitative analyses of patient satisfaction scores stratified by demographics to understand where gaps in experience exist. Results suggested differences among certain groups. As such, we applied a broad, systematic approach to our patient experience understanding to prioritize and implement improvements. Methods: A multidisciplinary team conducted an analysis of patient experience using a phased mixed method approach to identify areas for improvement. First, the team analyzed ̃50,000 patient experience surveys (Mar 2019-Feb 2021). Surveys were collected from all DFCI-sites and stratified by race, ethnicity, and language. Significance testing was conducted using z-tests. Second, results of the quantitative analysis were used to define focus group participant demographics and interview questions. Results: The analysis found demographic differences in response rates (White 25.5%, n = 24,519; Black 14.0%, n = 567; Asian 14.7%, n = 495; Hispanic or Latino 11.6%, n = 92; English 25.1%, n = 25,074; Non-English 11.2%, n = 332) and lower top box satisfaction scores (% patients rating in highest category) for patients of color and patients whose preferred language is not English (Table). Table shows results from a survey question asking patients to rate overall quality of care received at the facility. Next, DFCI will conduct fourteen focus groups with diverse patient groups to learn where DFCI has improvement opportunities. Focus groups will include English-speaking Black, Indigenous, Patients of Color as well as Spanish, Arabic, Mandarin, and Cantonese speaking patients. Following focus groups, a thematic analysis will be conducted, and recommendations will be prioritized and implemented by multidisciplinary teams. Conclusions: Patient experience survey data are typically reported in aggregate, masking variation among the demographic groupings in which patients identify. Using a systematic approach, stratifying the data specifically to understand where differences exist, was fundamental to understanding gaps in experience among separate groups of patients. This granular knowledge is critical to providing an equitable patient experience and is the necessary approach that will allow us to identify and prioritize interventions to improve the patient experience for all. Through our approach, we aim to elevate voices of patients across demographic groups and to inform the health delivery interventions needed.[Table: see text]
VOCAL (Views of Ovarian Cancer patients-how maintenance therapy Affects their Lives) study: A lens into the financial and quality of life (QoL) impact of disease burden and ethnic disparities reported directly by the patient.
Authors: Chase Dana Meredith , Shukla Soham , de Courcy Joanna , Ellis Hilary , Piercy James , Taylor-Whiteley Teresa , Golembesky Amanda , Wethington Stephanie L. 
Published: September 2022

274 Background: Limited real-world (RW) financial burden and QoL data exist for patients (pts) with advanced ovarian cancer (aOC). Differences in QoL have yet to be explored based on ethnicity. Methods: This cross-sectional online survey included US aOC pts who completed first line (1L) treatment, were ≥18 years, and eligible for 1L maintenance (1Lm). Financial burden was measured by employment status, health insurance coverage, household income, and expenses. QoL was measured by 2 validated patient-reported outcome (PRO) measures: EQ-5D-3L (mobility, self care, activities, pain/discomfort, and anxiety/depression; reported as no, some, or extreme problems) and EORTC QLQ-C30 (functional and symptomatic items). Results: 152 pts from 27 states were surveyed. The most common ethnicities were White (W; 104 [68%]), Black/African American (B/AA; 19 [12%]), Hispanic and Latino (H/L; 11 [7%]). 76 (50%) were not working (unemployed, retired, on disability, or long-term sick leave); 45 of these did not work due to aOC (W: 27/104 [26%], B/AA: 10/19 [53%], H/L: 4/11 [36%]). W pts spent the most on medical costs (mean [SD]: $396.60 [SD: 996.10]) and tests/labs ($133.50 [483.89]). Active surveillance was the most common aOC treatment (39% [W: 41%; B/AA: 32%, H/L: 36%]). Over a quarter of W (27%) and H/L (27%) pts, and nearly half of B/AA (48%) pts were receiving IV 1Lm for aOC. Fewer H/L and B/AA pts were offered genetic testing compared with W pts (27% and 58% vs 83%, respectively). On EQ-5D-3L dimensions, a higher proportion of W pts reported no problem with walking (W: 72%, B/AA: 53%, H/L: 55%), self care (W: 94%, B/AA: 79%, H/L: 64%), usual activities (W: 53%, B/AA: 26%, H/L: 27%), and no pain/discomfort (W: 52%, B/AA: 32%; H/L: 36%). B/AA pts reported the lowest current health status score (mean [SD] EQ-5D VAS score: 53.5 [18.46]). 19% of pts reported extreme anxiety/depression, the highest proportion was seen for H/L (5; 45%) followed by B/AA (7; 37%) and W (10; 10%) pts. Of the EORTC-QLQ-C30 functioning items (100 = highest functioning), the highest impact was seen on emotional functioning (mean [SD]: 59.8 [26.56]; W: 65.5 [23.83], B/AA: 48.2 [28.13], H/L: 53.0 [29.17]). Of the symptom items (100 = highest impact), the highest score was seen for insomnia (mean [SD] 39.5 [30.79]; W: 39.4 [28.54], B/AA: 35.1 [30.38], H/L: 48.5 [45.62]) and fatigue (mean [SD] 36.1 [26.89]; W: 34.4 [26.34], B/AA: 46.2 [29.22], H/L: 33.3 [32.96]). Conclusions: This novel assessment of RW financial burden and PROs by ethnicity signals important health disparities for B/AA and H/L vs W pts, highlighting a need to improve quality of care and support for pts of these ethnicities.
Longitudinal assessment of material financial hardship and food insecurity among families of Hispanic/Latino and non-Hispanic/Latino White childhood patients with cancer.
Authors: Banegas Matthew P. , Aristizabal Paula , McDaniels-Davidson Corinne , Nodora Jesse 
Published: September 2022

276 Background: Cancer is the second leading cause of death among US children. Among Hispanic/Latino (H/L) childhood cancer patients, social, economic, and cultural barriers increase risk for limited access to cancer care and poor health outcomes. We compared the prevalence of material financial hardship (MFH) and food insecurity over time between H/L and non-H/L White families of childhood cancer patients. We hypothesized H/L families would have higher MFH and food insecurity. Methods: In this prospective observational study, parents/guardians (n = 107) of children with newly diagnosed cancer and receiving treatment at Rady Children’s Hospital San Diego were enrolled from July 2019 to November 2021. Eligible participants included primary caregivers of a child aged 0-17 years who was newly diagnosis with cancer and who were able to write and speak English or Spanish. The primary outcomes of MFH and food insecurity were collected via survey at baseline, 3-, 6-, 12- and 24-months following enrollment. Sociodemographic and clinical characteristics were collected at baseline only. Separate generalized estimating equation models with binomial distribution and exchangeable correlation structure were used to assess the longitudinal associations between H/L ethnicity with MFH and food insecurity, adjusting for sociodemographic covariates. Results: Study participants included 61 H/L (57%) and 46 non-H/L White (43%) parents/guardians. The majority were married (74%), < 45 years old (80%), primarily spoke English at home (74%) and had public insurance (55%). At baseline, MFH was reported by 63% of H/Ls and 38% of non-H/L Whites, while food insecurity was reported by 56% of H/Ls and 44% of non-H/L Whites. In adjusted GEE models, H/Ls experienced a lower, though non-significant, risk of both MFH (adjusted Odds Ratio [ORadj] = 0.85, 95% Confidence Interval [95% CI]:0.39-1.87] and food insecurity (ORadj = 0.58, 95% CI:0.22-1.55) over time, compared to non-H/L Whites. Public insurance was associated with increased risk of MFH (ORadj = 2.71, 95% CI:1.23-5.96] and food insecurity (ORadj = 4.09, 95% CI:1.39, 12.05) over time, compared to private insurance. Conclusions: In this prospective study, self-reported MFH and food security were highly prevalent in the 24 months following baseline, though they did not significantly differ between H/L and non-H/L White parents/caregivers. Public insurance was associated with excess risk of both MFH and food insecurity, over time. Despite no observed differences, it is imperative that larger, prospective studies investigate the long-term patterns of social risks among underserved and underrepresented families of childhood cancer patients, as well as the association between social risk and cancer outcomes.
Feasibility of large scale distress screening at an academic center and associated network sites using an adapted patient-reported outcome instrument and reflexive suicide screening.
Authors: Gupta Divya Myadam , Savadamuthu Vikashini , Qin FeiFei , Roy Mohana , Herring Jason Blake , Robinson Ashley , Terrell Catherine , Neal Joel W. , Lahijani Sheila , Ramchandran Kavitha 
Published: September 2022

278 Background: Regular distress screening of patients with cancer is mandated by cancer care guidelines, with 25-50% of patients with cancer experiencing some level of distress. The COVID-19 pandemic amplified symptoms of distress and shifted oncologic care delivery towards telemedicine. In light of challenges faced with implementation of such screening, especially during this pandemic, we sought to assess the feasibility of implementing patient-focused distress screening at a large academic cancer center and its associated network sites. Methods: We designed a modified distress screening tool with reflexive suicidality and mental health screening consisting of 1) Wellness Reflection, a questionnaire that incorporates questions from Patient-Reported Outcomes Measurement Information System-Global Health (PROMIS-GH) to monitor patients’ physical, mental, and social health and to assess patients’ needs for extra support, and 2) modified Patient Health Questionnaire 2+9 (PHQ 2+9) tool to screen for depression and suicide risk. This tool was used to triage patients in need of further assessment by the clinical team, including consideration for referrals to cancer supportive services. The two-tiered distress screening tool was delivered to patients at Stanford Cancer Center and 5 affiliate sites for in-person clinic visits starting September 2019. The Wellness Reflection was launched starting June 2020 for video visits. Results: From October 1, 2019 to May 14, 2021, 147,165 questionnaires representing 46,341 patients were collected. The overall Wellness Reflection questionnaire response rate was 55%; the video visit questionnaire response rate was ̃70%, higher than the in-person visit response rate of ̃50%. About 6% of questionnaires analyzed showed a request for more support, most commonly emotional and physical/symptom support, and this was consistent during the COVID-19 pandemic. 18.6% of questionnaire responses screened positive for further assessment, and those that triggered reflexive suicidality screening had a 17% positive PHQ 2+9 rate. Following assessment, 13,631 referrals to cancer supportive services were generated. Conclusions: The adoption of commonly available patient-reported outcome tools, including PROMIS-GH and PHQ 2+9, as a large-scale distress screening method for both in-person and tele-health clinic visits during the COVID-19 pandemic is feasible at a large academic cancer center and network sites. The volumes of positive screens and referrals were lower than expected despite broader implementation of distress screening and amplified symptoms of distress due to the pandemic.
Using real-world patient experiences to inform point-of-care decisions and care management strategies in urothelial carcinoma.
Authors: Ackbarali Tariqa , Chisolm Stephanie , Gore John L. , Meeks Joshua J , Shore Neal D. 
Published: September 2022

280 Background: Approvals of targeted therapies and immune checkpoint inhibitors hold the promise of improving long-term survival in patients with urothelial carcinoma. Competence gaps that were identified prompted the design of a unique educational series for the urology-oncology team. Optimal management of urothelial carcinoma relies on effective patient-provider communication and decision-making. To provide an integrative learning experience, the patient voice was embedded into the clinical content through shared insights and patient-reported data. Methods: A 4-part CME series was launched live-online in October 2021 in partnership with the Large Urology Group Practice Association and remains on-demand through October 2022 at UroCareLive.com and OMedLive.com. A companion patient program was held in September 2021 in partnership with the Bladder Cancer Advocacy Network and remains on-demand at CancerCoachLive.com. Behavioral assessment of preferences and attitudes toward managing patients were examined throughout the CME series and patient/caregiver program. A planned analysis of the data from these questions will determine patient and clinical impact. Outcomes from the patient program were analyzed and presented during the CME series followed by expert-identified strategies to improve clinical practice. Results: To date, 775 clinicians and 15,193 patients have participated in the educational initiative. Of the patient-reported experiences and preferences: 44% prefer to discuss benefits and risks of treatment options; and while 85% prefer to make decisions with their team, 67% felt overwhelmed and ultimately allowed their team to select therapy. Patient insights revealed challenges related to quality of life, side-effect management, and disease management. Patient-provider disparities were observed across preferences for point-of-care treatment discussions and quality of life challenges. Clinical and patient impact following integration of the patient voice will be analyzed. Conclusions: The initiative contributed to the provision of valuable patient insights and preferences based on real-world experience which were integrated into provider education. Increasing this awareness fostered practical strategies and discussion to improve patient-centered care. Education incorporating the patient voice into provider education can further sensitize clinicians to patient concerns and facilitate point-of-care decision-making.
The Colorectal Cancer Alliance: Reshaping volunteerism during COVID-19.
Authors: Newcomer Kim , Miller Ali , Fathi Negeen , Shoeb Abdullah 
Published: September 2022

282 Background: Nonprofits across the United States have been severely limited during the ongoing coronavirus disease pandemic and have seen big drops in volunteer engagement. According to one survey, two-thirds of volunteers decreased or stopped contributing their time altogether due to the pandemic leaving a major gap in available support for nonprofits at a time when demand for many of their services has risen substantially. The Colorectal Cancer Alliance sought to adapt to the “new normal” of socially distanced operations by restructuring existing programs and encouraging our community to volunteer in virtual capacities during this time of social distancing. Methods: Each year, staff members at the Alliance collect data on volunteer roles, hours, and participants. Using this data, we are able to analyze and compare the number of volunteers, volunteer hours, and engagement rates for each role Data collected and reported for 2021 was compared to previous years to assess the impact of the COVID-19 pandemic on volunteer hours at the Alliance. Results: The Colorectal Cancer Alliance’s established volunteer programs were promptly reshaped at the beginning of the COVID-19 pandemic. Leveraging existing fluency in remote volunteer roles, the Colorectal Cancer Alliance provided more peer-to-peer support both virtually and remotely during this time of social distancing. The total reported number of volunteer hours for 2021 was 85,100.5 hours, which is a nearly 300% increase from 2020 (29,391.5 hours), nearly 400% increase from 2019 (22,141.5 hours), and over 500% increase from 2018 (16,582 hours). The highest number of volunteer hours was seen in our DIY (peer-to-peer fundraising) program at 34,681 hours, followed by our Team Captains Walk at 16,200 hours, and in online peer-to-peer support groups Ally-to-Ally and Blue Hope Nation (BHN) at 9,083 hours. Compared to the previous year, DIY increased by over 350% (10,646 hours) and Ally-to-Ally and BHN increased by over 1200% (867 hours). It is interesting to note that peer-to-peer mechanics drove the largest increases during the isolating COVID years. Conclusions: Our results indicate the Colorectal Cancer Alliance was able to maintain full functionality and discover new and creative ways to not only keep volunteers engaged, but to also increase volunteer impact during the pandemic. The spike seen in peer-to-peer support efforts and activities helped contribute to increased psychosocial support for our volunteers and constituents. These positive outcomes from virtual volunteerism encourage us to continue to engage our volunteers in a virtual capacity going forward to broaden the scope of our impact during this time of social distancing. As COVID-19 restrictions are lifted, the Alliance plans to maintain the virtual and remote programs in place and to continue encouraging our allies to volunteer in any capacity they can.
Reducing central-line associated bloodstream infections (CLABSIs) through patient accountability contracts: A pilot project for patients on Weill Cornell Medicine (WCM) bone marrow transplant (BMT) service.
Authors: Garcia Christine Ann , Taflin Stefanie , Assalone Dianna , Rodriguez German , McHugh Catherine , Whitmore Barbara , Hatola Christine , Calfee David P , Shore Tsiporah 
Published: September 2022

283 Background: Patients with cancer whom develop Central Line Associated Blood Stream Infections (CLABSIs) have increased mortality rates ranging from 12% to 40%. Transplant patients are particularly at risk due to cytotoxic chemotherapy regimens and/or graft-versus-host disease with risk for translocation of oral and gut flora to the bloodstream. At Weill Cornell Medicine, we had 102 CLABSIs in 2021, 25 (25%) of which attributed to patients in oncology units. The Bone Marrow Transplant (BMT) Unit, had 10 of the 25 (40%), 2.05 CLABSIs per 1000 central line inpatient days with a CLABSI standardized infection ratio (SIR) of 1.26 (above goal of 1). Methods: Our SMART aim was to reduce the number and rate of CLABSI events on the BMT unit by 10% from February 1, 2022 – June 30, 2022 by educating patients on preventive strategies and implementing a patient central-line maintenance “contract.” We had previously optimized evidence-based nursing interventions for CLABSI prevention which included adherence to central line maintenance best practices, weekly device rounds with Infection, Protection & Control to monitor compliance with dressing changes and IV tubing, annual CLABSI prevention competencies, peer-to-peer validation of blood culture lab draws, weekly quality-improvement huddles and interdisciplinary root cause analysis discussions for CLABSI events. Patient noncompliance with daily recommendations for central line care was identified as a possible CLABSI risk factor that was not previously addressed in the bundle. Newly-developed patient education and a “contract” was incorporated into the BMT admission process. Results: The BMT CLABSI patient education and contract was initiated with all new patients admitted to unit in February 1, 2022. Since starting, the BMT unit CLABSI SIR has decreased from 1.26 to 0.6, and from a CLABSI rate per 1000 central lines days of 2.05 to 0.97. Conclusions: Engaging patients in their own care of the central lines can significantly reduce overall risk of central line infections. Patients have positively responded to this pilot project. We have translated educational materials and contracts to other languages and are considering expansion into other units.