bluuebunny/crossref_metadata_2025 huggingface dataset:
Evaluating the use of web versus mobile devices for ePRO reporting and severe symptom responses at 6 cancer centers.
Authors: Cronin Christine , Tramontano Angela , Schrag Deborah , Wong Sandra L. , Osarogiagbon Raymond U. , Hazard-Jenkins Hannah W. , Dizon Don S. , Bian Jessica J , Hassett Michael J.
Published: September 2022

241

Background: Monitoring electronic patient-reported outcomes (ePROs) improves quality of life, reduces acute care, and extends survival in cancer patients. Different modalities for collecting ePROs exist. Many efforts focus on mobile apps, but optimal methods for reporting are not well established. We sought to determine whether patient engagement and symptom reporting patterns differed by submission modality. Methods: Through the SIMPRO Consortium, ePRO questionnaires (eSyM) were collected from medical oncology (MO) and surgical (SUR) patients at six health systems between September 2019-March 2022. Questionnaires assessing 12 symptoms plus functional status and overall wellbeing were sent 2-3 times per week via patient portal and made accessible through two modalities: a web platform or mobile device app (mobile). Patterns and predictors of reporting modality were ascertained using descriptive statistics and logistic regression. Results: In total, 6460 patients submitted 47,736 questionnaires: 74% via web and 26% via mobile. Of 2679 MO responders, 53% reported via web, 0.7% via mobile only, and 43% via both. Older, black, and unemployed MO patients were more likely to report via web only. Of 3781 SUR responders, 55% reported via web, 0.3% via mobile only, and 45% via both. Older and unemployed SUR patients were more likely to report via web only; disabled SUR patients were less likely to use web only. Patients utilizing both modalities reported significantly more moderate-severe symptoms than web only responders [Table]. Conclusions: Very few patients reported via mobile only, which was unexpected in the context of trends toward mobile-based patient engagement. Moderate-severe symptoms were reported more frequently by dual-modality responders. Patients with access to both modalities may be more likely to report symptoms in real-time compared to web-users who may delay reporting until they have access to a device. The resulting difference between web and mobile reporting modalities could be due to age, race, and employment; future studies should assess other factors, such as locality and cellular coverage. This work emphasizes the importance of deploying ePROs via multiple modalities to maximize accessibility and response rates. Clinical trial information: NCT03850912. [Table: see text]
Are YouTube videos a reliable information source for young women with metastatic breast cancer?
Authors: Morena Nina , Ahisar Yitzchok , Wang Xena , Nguyen Diana , Rentschler Carrie A. , Meguerditchian Ari N.
Published: September 2022

244

Background: Young women with metastatic breast cancer (MBC) are an underserved population, rendering them susceptible to media sources that lack in credibility and reliability. YouTube (YT) is the most commonly used search engine following Google. This study aims to assess the quality of MBC YT videos and to identify common themes in MBC experiences. Methods: A systematic review of YT videos with search terms “metastatic breast cancer young” was conducted in 08/2021. Title, date uploaded, length, poster identity, number of likes, dislikes, and comments were collected. Understandability, actionability were assessed using the Patient Education Materials Assessment Tool (PEMAT) for audiovisual (A/V) materials; information reliability/quality was assessed with DISCERN. Scoring was done by 3 reviewers. Themes, presence of sponsorships, healthcare professionals’ and patients’ narratives were also reported. Results: 101 videos were identified. Of these, 78.2% were sponsored. Average video length was 14.9 minutes (SD 22.5). Majority were posted by nonprofit groups and breast cancer advocacy organizations. Mean PEMAT A/V score was 78.8% (SD 15.3) and 43.1% (SD 45.2) for understandability and actionability, respectively. Overall, videos had moderate reliability and quality levels; mean DISCERN score was 2.44/5 (SD 0.7). Patient narratives were shared in 63.3% and healthcare professionals in 57.4%. Identified themes include treatment (66.3%), family relationship (45.5%), motherhood (37.6%), terminal status (31.6%), the path to diagnosis (28.7%), and spousal relationship (24.7%). Conclusions: YouTube videos about MBC are highly understandable but demonstrate low to moderate rates of actionability, with low reliability and quality scores. Many have a potential commercial bias. More research is needed to evaluate their impact on patient decisions and possible interventions provided by healthcare institutions.[Table: see text]
Communication with caregivers about tumor genomic sequencing in childhood cancers.
Authors: Lee Brittany M. , Bonkowski Emily , Marron Jonathan M , Barton Krysta S. , Rosenberg Abby R.
Published: September 2022

245

Background: Advances in genomic testing have the potential to improve the diagnosis, risk stratification, and targeted treatment of childhood cancers, and tumor genomic sequencing (TGS) at diagnosis is becoming standard of care. Nevertheless, little is known about how best to communicate information about the process and intent of TGS to patients and their caregivers, nor about discussion of TGS results and their implications. This demonstrates a glaring need, particularly given the already distressing time of a new diagnosis. Methods: This qualitative study included English-speaking caregivers (> 18yo) of children (< 18yo) with cancer (diagnosed 2mo-3yr prior), who had TGS sent at diagnosis. Caregivers completed a short demographic survey, and we extracted child medical data from the electronic health record. We conducted semi-structured, one-on-one interviews with participants about their experiences with and recommendations for communication about TGS at diagnosis. We transcribed the interviews verbatim and used Dedoose qualitative software to code the transcripts. We employed a conventional content approach for codebook development and used inductive coding, followed by deeper thematic analyses. Results: A total of 12 caregivers enrolled. Their median age was 39 years (range 32 – 52) and most were white (11, 92%), female (9, 75%), and had at least a bachelor’s degree (8, 67%). Their children had leukemia (8, 67%), neuroblastoma (2, 17%), or brain tumors (2, 17%). Ten (83%) of the children had somatic findings on TGS, 3 (25%) of which prompted the recommendation for germline testing. On average, interviews lasted 36 minutes (19-46). We found two information-delivery themes, both of which underscored existing communication recommendations in pediatric oncology. (1) Caregivers experience informational and emotional overload at the time of their child’s cancer diagnosis. The intensity of emotions negatively impacts information processing, and comprehension of information generally occurs best over time. Some parents described managing their emotions through eliciting more information. (2) Caregivers recommended a systematic delivery of information about TGS. Many preferred concise, direct information about TGS upfront, along with written information and opportunities to request more information over time. Some caregivers specifically cited the value of receiving information that would allow them to be “mentally prepared,” such as hearing about the potential for unexpected findings. Conclusions: Caregivers’ preferences for communication about TGS at diagnosis fit within established communication practices in pediatric oncology. Given both the complexity and potential psychosocial impacts of TGS, particular attention to systematic, standardized but tailorable information delivery to caregivers about TGS is warranted.
Advice from one patient to another: A qualitative analysis of patients’ perspectives about chemotherapy initiation.
Authors: Malinowski Catalina , Housten Ashley , Paredes Edna , Chavez Mac Gregor Mariana
Published: September 2022

255

Background: Although the association between delays in (neo)adjuvant chemotherapy initiation and adverse outcomes is well-documented, research into what those with breast cancer experience during their delay is sparse. This information can provide insight for newly diagnosed women on preparing for chemotherapy initiation and inform potential interventions to facilitate chemotherapy initiation. This study aimed to assess and identify the multilevel factors contributing to the barriers and facilitators of initiating chemotherapy. We present a qualitative exploration of patient shared experiences navigating the cancer care journey from breast cancer diagnosis to treatment activation. Methods: In this qualitative study, we included English or Spanish-speaking women diagnosed with primary invasive breast cancer who experienced chemotherapy initiation delay. We conducted semi-structured interviews exploring perceptions about individual, community, and system-level barriers and facilitators contributing to starting chemotherapy. We prompted participants to reflect on their personal experience navigating their cancer journeys from initial diagnosis to treatment initiation. Interviews were audio-recorded, transcribed verbatim, and coded using the Sort and Sift, Think and Shift qualitative approach to identify concepts and themes within and across transcripts. Results: Twenty-two participants completed semi-structured interviews and questionnaires (range 27-70 years); they identified as Latina (n = 8), Black (n = 5), and non-Latina White (n = 9). Our participants thought that engaging their medical teams and seeking support earlier was essential for their treatment journeys. They emphasized being proactive and thorough in all aspects of their journey, particularly in processing medical recommendations, communicating with medical personnel, and identifying areas of need. Although explicit insight into chemotherapy delay was rare, participants expressed the importance of beginning treatment promptly. They shared advice on acquiring support (e.g., financial, emotional, logistical, spiritual) and suggested connecting with breast cancer survivors to overcome the complex challenges of cancer care. Conclusions: Patients outlined the benefit of attaining support outside of their medical teams to overcome barriers and initiate treatment promptly. Family, friends, and connecting with breast cancer survivors were vital in achieving activation. Patient perspectives regarding barriers and treatment facilitators are an essential insight into cancer care journeys that can inform interventions to support patients and improve outcomes. We are using these results to develop a pilot study, to test the acceptability and feasibility of a culturally relevant patient navigation intervention to increase self-efficacy and avoid treatment delays.
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.
Physician-level variation in axillary surgery in older adults with T1N0 hormone receptor–positive breast cancer.
Authors: Minami Christina Ahn , Jin Ginger , Freedman Rachel A. , Schonberg Mara A. , King Tari A. , Mittendorf Elizabeth A.
Published: September 2022

284

Background: Randomized controlled trial data support safe omission of axillary surgery in patients >70 years old with T1N0 hormone receptor-positive (HR+) breast cancer, but utilization of axillary surgery in the U.S. remains > 80%. We sought to assess the proportion of variance in axillary surgery receipt that is attributable to surgeon-level differences vs. patient level differences, and assess the patient- and surgeon-level factors that affect axillary surgery receipt in this population. Methods: Women >70 years old with T1N0 HR+/HER2-negative breast cancer diagnosed from 2013-2015 in SEER-Medicare were linked to surgeon-level data from the American Medical Association Masterfile. Patients of low-volume surgeons (surgeons treating < 5 patients in this population over the study period) were excluded. To assess patient-and surgeon-level factors associated with axillary surgery receipt, we estimated hierarchical logistic regression models regressing receipt of axillary surgery on surgeon-specific random intercepts (null model). We then re-estimated this model including patient factors (age, Charlson Comorbidity Index (CCI), and a validated claims-based frailty index). Our final model included other surgeon-, patient-, and disease-level factors. The intracluster correlation (ICC) was used to estimate the proportion of total variance in the outcome attributable to the surgeon level. Results: Of 4,410 women included, 58.3% were >75 years old, 20.7% were frail, and 13.9% had a CCI>2; 86.1% of women underwent axillary surgery. Of 432 surgeons represented, 52.6% were female and 9.5% identified as surgical oncologists. In the null model, 10.5% of the variance in the axillary evaluation was attributable to the surgeon-level, with 89.5% attributable to patient-level differences (Table). Adjusting for key patient-level variables (age, CCI, and frailty status) reduced unexplained patient-level variance, resulting in a greater proportion of total unexplained variance attributable to the surgeon level (13%). In our final model, physician subspecialty and years in practice were non-significant, but patients of female surgeons were less likely to undergo axillary surgery (OR 0.69, 95% CI [0.51-0.95]). Conclusions: In older women with T1N0 HR+ disease, patient-level differences reassuringly account for most of the variation in receipt of axillary surgery. Drivers of residual patient-level variation may include unmeasured factors such as differences in surgeon-patient communication and patient preferences.[Table: see text]
Evaluation of a virtual, nurse practitioner–led, pre-counselling seminar for mainstream germline genetic testing using a patient-reported outcomes measure (PROM).
Authors: Rauw Jennifer Marie , Barnhardt Laurie , Lockyer Heather
Published: September 2022

290

Background: Ovarian cancer (OC) is a common, often fatal disease where 1/4 of cases are due to hereditary syndromes. Genetic screening of OC patients provides access to targeted treatments and screening recommendations. Patients are currently referred to a virtual, group, pre-counseling seminar, delivered by a Nurse Practitioner, where consent for germline genetic testing is obtained and results are delivered later by a Genetic Counsellor (GC). Previously, we found group pre-counseling to be an effective method to decrease wait times from diagnosis to test results. The purpose of this study was to evaluate the patient seminar experience using the previously validated, Genetic Counselling Outcome Scale (GCOS-24). BC Cancer- Victoria is a satellite of BC Cancer, providing tertiary cancer care to a population of ̃1.2 million. Methods: We completed a REB approved, prospective study recruiting patients referred to the group pre-counseling consenting seminar. The GCOS-24 was delivered electronically both pre (1) and post (2) attendance at the seminar, and 4 weeks post genetic counselling visit (3). Inclusion criteria included OC patients referred for germline BRCA testing between Jan 1, 2021, to Feb 28, 2022, > 18 years old who attended the group consenting seminar. Patients who could not communicate in English were excluded. Data was stored electronically via REDCap, a secure web-based platform. Results: Thirty-eight patients attended the seminar and 28 consented to participate and completed the first questionnaire. Twenty-five patients completed the second questionnaire and 21 completed the third. The average age was 67, with 80% high grade serous, 11% low grade, 6% clear cell and 3% endometrioid OC subtypes. Forty- nine percent of participants were from Victoria area, and 11% were 225+ km away. The average GCOS-24 score for pre seminar participants was 111, post seminar 121 and post GC’s appointment 124. Twelve (52%) patients scored minimum clinically important difference (MCID) increase between questionnaires 1 and 2, and 14 (67%) patients scored MCID increase between questionnaires 1 and 3. The questions reflecting the most improvement in average scores between questionnaires 1 and 3 were exploring knowledge and emotions. Conclusions: Virtual group pre-counseling sessions for OC patients are feasible and allow germline genetic testing access to a geographically diverse group of eligible patients. Mean GCO-24 score almost reached MCID between pre seminar and post seminar visit and did reach MCID between pre counselling and post GC visit. There was a general trend to improved scores as patients moved from counselling naïve to pre-counseling to completed GC appointment. Virtual pre-counseling seminars should be considered as high impact, resource light method of improving access to germline genetic counselling for OC patients.
Impact of acute toxicities associated with chimeric antigen receptor (CAR) T-cell therapy on health-related quality of life (HRQOL) in relapsed or refractory (R/R) large B-cell lymphoma (LBCL).
Authors: Patrick Donald , McManus Shauna , Podger Lauren , Saunders Ashley , Braverman Julia , Liu Fei Fei , Keating Scott J.
Published: September 2022

294

Background: TRANSCEND NHL 001 (TRANSCEND; NCT02631044) evaluated efficacy and safety of the CAR T cell therapy lisocabtagene maraleucel (liso-cel) as third-line or later treatment in patients with R/R LBCL. Prior research demonstrated improvements in HRQOL with liso-cel; however, evidence of HRQOL in the context of CAR T cell‒specific adverse events was not evaluated. In TRANSCEND, the incidence of all-grade cytokine release syndrome (CRS) and neurological events (NE) was 42% and 30%, respectively. This analysis examined longitudinal HRQOL in the presence of CRS and NEs among clinical responders. Methods: Patients in TRANSCEND who responded to liso-cel treatment (n = 137) were stratified into 3 groups: no CRS or NEs, either CRS or NEs but not both, and both CRS and NEs. HRQOL was evaluated with the European Organisation for Research and Treatment of Cancer core quality of life questionnaire (QLQ-C30) and EQ-5D-5L. Summary statistics and change from baseline (liso-cel infusion; CFBL) were calculated for each time point. Results: For liso-cel‒treated patients who responded to treatment and developed CRS, NEs, or both, clinically relevant QLQ-C30 functional (physical, role, and cognitive) and fatigue scores indicated a noticeable nadir (low point) around 1 month post-baseline after liso-cel infusion, followed by a trend toward restoration of baseline status, generally achieved by 2 months after baseline. The primary difference between CRS/NE subgroups appeared to be the extent of decline or depth of the nadir. Patients with no CRS or NEs after liso-cel infusion did not experience an initial decrease in HRQOL/increase in symptom severity and instead showed a trend toward improvement over time (Table; QLQ-C30 fatigue as an illustrative example). This was also observed for EQ-5D-5L index scores. Conclusions: These findings support the anecdotal clinical experience that CRS/NEs are not associated with any long-term detriment in overall HRQOL and indicate a need for discussion with patients before treatment and early symptom monitoring and management of CRS or NEs. Clinical trial information: NCT02631044. [Table: see text]
Supportive oncology care at home after discharge for patients with advanced cancer.
Authors: Lage Daniel E , Johnson Patrick Connor , Hornstein Shira , Neckermann Isabel , Schmelkin Alane , Grayzel Connor , Brown Patricia , McGrath Meghan , Shulman Eliza , Smith Melissa , Nipp Ryan David , El-Jawahri Areej
Published: September 2022

295

Background: Patients with advanced cancer often experience frequent and prolonged hospitalizations, and the transition from hospital to home represents a critical period for these individuals, as they prefer to maximize time at home and avoid readmissions. We sought to demonstrate the feasibility and acceptability of a Supportive Oncology Care at Home intervention to address the post-discharge needs of recently hospitalized patients with advanced cancer. Methods: We conducted a single-arm pilot trial at Massachusetts General Hospital (MGH). We enrolled English-speaking adults with advanced solid tumors experiencing their second or later unplanned hospitalization, who were being discharged home without hospice services and residing within a 50 mile radius of MGH. The three-week intervention consisted of: 1) hospital in the home care model for proactive symptom assessment and management, including clinician visits to assess patients, draw labs, administer intravenous medications and hydration, and ensure optimal symptom management; 2) remote monitoring of daily patient-reported symptoms, vital signs, and body weight; and 3) structured communication with the oncology team. The primary endpoint of the study was feasibility, defined as ≥60% of approached and eligible patients enrolling and ≥60% of participants completing daily symptom assessments. After intervention completion, patients rated the helpfulness and convenience of the intervention and symptom monitoring technology. Results: From 12/2021-6/2022, we enrolled 40 out of 66 approached patients (60.6% enrollment rate). Enrolled patients (median age = 58.5 years, 50% female, 75% white, 68% married, 50% gastrointestinal cancers) completed 93.8% of daily symptom assessments. 12 patients (30%) did not complete the intervention due to withdrawal (5), hospice transfer (4), or death (3). Among enrolled patients, 20.0% were enrolled in hospice and 15.4% died at 30 days after hospital discharge. In exit interviews, 100% and 75% rated the intervention and symptom monitoring as helpful, respectively. 83% of patients found the in-home monitoring technology convenient. Conclusions: We found that a three-week Supportive Oncology Care at Home intervention is a feasible approach to providing post-discharge care for high acuity, seriously ill hospitalized patients with advanced cancer. These patients also found the intervention highly acceptable. Future studies will test the efficacy of the intervention for reducing hospital readmissions, improving symptom management and quality of life, and increasing days spent at home near the end of life. Clinical trial information: NCT04637035.
Remote triage and the oncology patient experience.
Authors: Hoegger Blake , Townsend Sydney , Ortega Lance , Mikan Sabrina Q. , Patt Debra A. , Books Holly
Published: September 2022

297

Background: Investments in infrastructure to enhance care delivery are often partnered with practice participation in alternative payment model contracts and innovative care delivery models. Oncology nurses routinely are physically located in a cancer practice. We sought to understand the impact of centralizing resources to work remotely building upon triage pathways already in place on staffing and symptom call resolution with the goal of optimizing outpatient symptom management and patient satisfaction. Due to a national RN shortage and a historical high number of RN vacancies in oncology, we thought this this innovative staffing solution may attract, retain, and elevate the role of RNs. Methods: A needs assessment was conducted to evaluate call volumes, staff levels and duties. A gap analysis was performed to determine which duties would be assigned to remote triage versus in person staffing. Some sites had triage; all sites upgraded to new optimization of assessment and management. Standardized evidence based care and communication pathways were implemented. RNs were trained to follow structured workflows for call ticket resolution. A regional pool supported primary triage RNs who were assigned to each site. The model allowed for flexible staffing while building and maintaining relationships with local providers. Additionally, remote triage RNs were given the opportunity to augment their assessment with audio/visual telehealth as needed. Results: In the first 4 months, 9 pilot sites decreased symptom management time by 50%; 1 site decreased by 70% (over 120 minutes down to 27 minutes). Since remote triage began, average resolution times reduced from 2.52 hours to 1.31 hours. One pilot site had an in-person triage position posted and attracted 4 applicants over 4 weeks. When the position was converted to a remote role, 38 applications were received in 1 week. Offering remote triage positions allowed RN recruitment from other states and gave tenured RNs within the organization an attractive new work model. Conclusions: Remote RN work is an attractive opportunity for RNs allowing for broader recruitment of candidates. Removing triage RNs from the clinic site allows them to focus on triage resolution and as a result call resolution times decreased substantially. Standardized communication pathways were developed, rolled out, and optimized in both virtual and in-person Triage RN roles statewide. Adherence to these communication pathways is critical to ensuring timely symptom management resolution and a sustainable workforce.