bluuebunny/crossref_metadata_2025_split huggingface dataset:
Self-reported patient barriers and the impact of digital health coaching on PRO in cancer.
Authors: Allison Matthew , Burton Stephen , Patel Dhiren , Brassil Kelly Jean 
Published: October 2019

189 Background: Barriers during cancer care include lack of social support, financial concerns, and communication with providers. While navigation has been identified as a way to address these concerns in the clinical context, opportunities exist to identify and address patient-reported barriers through digital health coaching to support patients beyond the clinical care setting. Methods: A retrospective analysis evaluated patient-reported barriers during cancer care for 708 individuals over the course of a digital health coaching program. Barriers were assessed in six domains, each represented by 5-10 questions in a company developed survey. The questions were administered prior to coaching on content aligned to the domains, specifically eating healthy, exercise, financial, access to care and medication adherence. Patients ranked both the presence and severity of the barrier. Patient reported outcomes such as exercise (Godin), health eating (Start the Conversation), financial toxicity (Comprehensive Score for Financial Toxicity (COST)) and physiologic and psychosocial outcomes (Patient-Reported Outcomes Measurement Information System Global Health (PROMIS-GH) 10) were measured and aligned to the barrier domains identified by the participants. Results: The eating healthy domain (2.43) received a significantly higher average score compared to other domains: financial (1.86), exercise (1.71), medication adherence (1.68) and access to care (1.65). Over the 12-week coaching program, physical activity increased by 56%, fatigue was reduced by 32%, financial toxicity was reduced by 8%, the healthy eating score improved by 17% and pain was reduced by 13%, as reflected in the PROMIS GH-10, Godin, STC and COST data. Conclusions: Outcomes suggest that healthy eating is a significant barrier identified by cancer patients during their treatment, followed by financial concerns and exercise, each of which demonstrated improvement over the course of digital health coaching. These results suggest digital health coaching provides a benefit to addressing barriers during cancer treatment and may improve patient reported outcomes, particularly as they relate to wellness behaviors such as healthy eating and exercise.
Developing a strategy for delivering educational information to patients with cancer.
Authors: Monteleone Emily Elizabeth , Rachek Meredith , Ibsen Alison , Carrino Cheryl M. , Wortham Edwin , Hook Andre , Steele Scott 
Published: October 2019

190 Background: Patients’ preferences and ability to receive information regarding their cancer diagnosis and treatment vary greatly. Large academic medical centers are skilled at diagnosing and treating cancer. The perceived patient experience can be influenced by the delivery of information provided to them by clinical teams, support staff, and online resources. This project identified nuances in how cancer patients absorb and reference information regarding their diagnosis and treatment; specifically, treatment modalities, side effects, and resources available. The objective was to develop a strategy to improve and standardize the delivery and availability of educational information in our large academic medical center. Methods: Development of a team that has influence and understanding in various communication functions throughout the enterprise. Primary focus was on cancer patients. Research was conducted in three phases. Phase one was a patient panel survey electronically administered. Phase two involved observations and interviews of current breast cancer patients. Phase three incorporated the feedback received and design concepts generated from research during phases one and two, and involved six cancer patient focus groups. Results: Panel survey results contained feedback from 777 participants previously diagnosed with or caring for someone with cancer. Observations and interviews encompassed over 40 hours of information gathering from all stages of the breast cancer treatment process, including survivorship. Focus groups involved 7-9 patients (50 total) each of varying ages and diagnoses, with 4 of the 6 groups treated at our cancer center. Conclusions: In getting to know patients, large academic medical centers can tailor their educational information to ensure everyone receives what is needed and wanted in the time and manner best suited for them. Core components of the strategy being developed are 1) formulating ways to personalize the delivery of information, 2) methods to allow patients’ caregivers to participate in educational discussions remotely, 3) enabling on demand access to content previously discussed in person, 4) setting expectations for the intent of appointments ahead of time.
Improving documentation of pain and constipation management within the cancer center of a large urban academic hospital.
Authors: Chineke Iloabueke Gabriel , Curry Marjorie Adams , Dutcher Giselle , Power Steve , Bernal-Mizrachi Leon 
Published: October 2019

192 Background: Pain and constipation are common among patients with cancer and remain inadequately controlled in many. Quality Oncology Practice Initiative (QOPI) assessment of pain and constipation at the Georgia Cancer Center for Excellence at Grady Health System identified documentation to be below benchmark levels. A quality improvement initiative to improve pain and constipation management was conducted. Methods: Given the low baseline documentation rates for pain (60%) and constipation (20%), we aimed for a 20-percentage point increase within one year. Based on cause and effect analysis and questionnaires to providers, our multidisciplinary team developed a new provider note template to integrate nurse’s assessment of pain and constipation into the provider’s documentation. A new order panel was developed in the electronic medical record (EPIC) to link appropriate orders with the pain and constipation plan. Results: Integrating the initial nursing assessment into the provider note template increased pain score documentation from 66.7% to 100%, P < 0.01 and pain management plan from 65.3% to 86.4%, P = 0.06. Similarly, constipation assessment documentation improved from 20.4% to 100%, P < 0.01 and a documented constipation plan improved accordingly from 11.2% to 29.1%, P < 0.01. As a result of this intervention, pain control at the 3rd clinic visit improved from 61.5% to 86.8%, P < 0.01. Emergency room visits related to pain and constipation decreased (16.2% to 14.9%, P = 0.19) and hospitalizations marginally increased (1.6% to 3.6%) during the study period. Conclusions: A standardized visit template and mandated assessment of pain and constipation exceeded the goal for improvement in documentation and positively impacted outcomes.
Stability of symptom clusters in patients with gastrointestinal cancers receiving chemotherapy.
Authors: Han Claire J. , Reding Kerryn , Cooper Bruce A. , Paul Steven M. , Conley Yvette , Hammer Marilyn J. , Wright Fay , Cartwright Frances , Levine Jon , Miaskowski Christine 
Published: October 2019

193 Background: Patients with gastrointestinal (GI) cancers who undergo chemotherapy (CTX) experience on average of thirteen symptoms. These co-occurring symptoms often cluster together and can influence various patient outcomes including quality of life (QOL). However, little evidence is available on how these symptoms change during a cycle of chemotherapy (CTX). An evaluation of how these symptom cluster together and how these symptom clusters change over time may provide useful information to guide symptom management strategies tailored to multiple symptoms. Objectives: The purpose of this study was to identify and compare symptom clusters using three symptom dimensions (i.e., occurrence, severity, and distress) at different time points during CTX (i.e., prior to CTX [T1], one week after CTX administration [T2], and two weeks after CTX administration [T3]) in patients with GI cancers. Methods: A modified version of the Memorial Symptom Assessment Scale was used to assess the occurrence, severity, and distress of 38 symptoms. Exploratory factor analyses were used to create the symptom clusters. Results: Five distinct symptom clusters were identified across the three symptom dimensions and the three assessments (i.e., psychological, CTX-related, weight change, GI, and epithelial). Psychological, CTX-related and weight change clusters were relatively stable for all three symptom dimensions as well as across time. GI cluster was identified only at T1, while epithelial cluster was identified at T2 and T3 for all three symptom dimensions. Conclusions: The number and types of symptom clusters appear to be relatively stable over time and across the symptom dimensions. Timely management of symptom clusters should be continued over the course of CTX including the recovery phases. Further studies are needed to explore the mechanisms of symptom clusters in patients with GI cancers undergoing CTX.
Performance of the patient reported CAPLET2.0 physical functioning assessment tool.
Authors: McCartney Alexandra , Singer Julia , Aggarwal Reenika , Hueniken Katrina , Commiting Raiza , Shah Shubhangi , Tang Susan , Bapat Priya , Chow Pansy , Dietrich Kristen , Hall Elizabeth , Brown M. Catherine , Xu Wei , Liu Geoffrey 
Published: October 2019

194 Background: CAPLET is a published patient reported outcome measure which assesses domains of physical function efficiently in cancer patients through a branching logic algorithm using a patient-reported outcome version of ECOG performance status and EQ5D-3L health utility score (PMID: 29982902; a total of 6 screening questions). We assessed the sensitivity and specificity of this tool after updating it with screening questions from the EQ5D-5L (CAPLET2.0) as opposed to the previously published EQ5D-3L screener (CAPLET). Methods: Eligible cancer patients across all outpatient clinics and disease sites (solid and liquid cancers) at the Princess Margaret Cancer Center completed a questionnaire on touch-screen technology containing the EQ5D-5L, patient-reported outcome (PRO)-ECOG performance scale, the gold standard WHODAS 2.0 (12 items) and HAQ-DI (20 items) physical functioning questionnaires, and a clinico-demographic survey. Results: Of 261 patients, 53% were female, 61% were Caucasian, and 71% had English as a first language. Disease sites included: 12% breast, 10% gastrointestinal, 12% genitourinary, 19% gynecological, 13% head and neck, 13% lung and 13% hematological cancers. The optimal branching logic cut-points were identified when PRO-ECOG, scored as 0-1 and individual EQ5D items scored with the best functioning category allowed specific WHODAS/HAQ-DI questions to be skipped. Against individual WHODAS-HAQ-DI items, CAPLET2.0 had sensitivities ranging from 83-100% (median 93%), and specificities of 50-82% (median 58%). Using CAPLET 2.0, 45% of patients could have skipped all but five questions measuring mental health and cognition which are always asked. Sensitivities, specificities and the proportion of questions that could have been skipped were all similar to the original CAPLET tool. Conclusions: CAPLET2.0, which uses the updated EQ5D-5L and PRO-ECOG as screening questions to assess physical function in cancer patients has comparable performance to the original CAPLET tool. CAPLET2.0 is therefore a viable alternative physical functioning screening tool for both routine and research use.
Correlates of distress for cancer patients: Results from multi-institution use of holistic patient-reported screening tool.
Authors: Weldon Christine B. , Gerhart James I. , Penedo Frank J. , Pasquinelli Mary , Martin Joanna , Khosla Paramjeet , Lillis Teresa , Lo Shelly S. , Feldman Lawrence Eric , Deamant Catherine , Berardi Rosa , Miranda Harry , Newsom Carol , Bowman Anne , Roggenkamp Betty , Trosman Julia Rachel 
Published: October 2019

199 Background: The Commission on Cancer (CoC) Standard 3.2 requires distress screening and indicated action for cancer patients. NCCN and ASCO supportive care and age-related guidelines include patient reported concerns beyond distress. This study compares PHQ4 scores to other patient reported concerns. Methods: The Coleman Supportive Oncology Collaborative aggregated “best of” screening tools to assess patient reported needs and concerns aligned with CoC, NCCN and ASCO guidance. This supportive care screening tool was implemented at 8 sites from July 2015 thru July 2018. Analysis used chi squared test. Results: Most patients, 86% (10,635/12,295), reported one plus concerns and/or above threshold scores on PHQ4, PROMIS Pain, Fatigue or Physical Function. A chi squared comparison of patients with at least mild distress on PHQ4 to patients with no distress resulted in p values < .0001 for every screening category. Conclusions: Patients with a PHQ4 distress score of mild, moderate or severe also reported statistically significant levels of practical, family, physical, nutrition and treatment concerns. These patients also scored threshold levels for PROMIS Pain, Fatigue, and Physical Function. Screening only for distress without screening for other patient concerns may direct patients to services that do not address or focus on the underlying cause of the distress. [Table: see text]
Effects of rising drug costs on efforts to control overall cost at a large academic cancer center.
Authors: Adelson Kerin B. , Canavan Maureen , Supalla Susanna N. , Sedghi Tannaz , Chaudhry Basit , Sinanis Naralys , Gross Cary Philip 
Published: October 2019

2 Background: Value-based payment programs like the Oncology Care Model (OCM) have focused efforts to reduce costly acute care use through improvements in access and coordination rather than targeting the exponential rise in pharmaceutical pricing. We assessed how participation in OCM affected total cost of cancer care at a large academic cancer center. Methods: Using Medicare claims for Yale-Smilow Cancer Hospital, an NCI-designated cancer center with an academic hub and 10 community practices, we identified episodes for chemotherapy initiated during a historical period (pre-OCM, 2012-2015) and performance period (post-OCM, 2016-2017) following OCM criteria to identify total cost of care. We reported frequency of utilization categories, the mean cost per episode, the proportion of total cost attributed to each utilization category and compared pre- and post-participation periods. Results: There were 8,843 episodes during the historical period and 6,679 episodes during the performance period. The mean total cost per episode increased from $28,645 to $32,666, but this was less than the Medicare-defined expected increase (target price). Between the two periods, the percentage of total episodes decreased for emergency department (ED) use from 36% to 33%, inpatient care from 33% to 29%, and post-acute care from 28% to 25% (p < 0.01). Mean costs of drugs per episode increased by 27% between periods, and from 52% to 58% of total cost of care (p < 0.01). While mean cost per episode for ED, inpatient, and post-acute care remained stable, the mean cost per episode for antineoplastics increased 39% from $10,676 to $14,843. Conclusions: After implementing OCM, we beat the Medicare target largely by decreasing acute care use and stabilizing the cost of hospitalizations and ED; however, actual cost increased largely due to pharmaceutical spending. Because drug costs were the largest proportion of overall cost of care, future value-based models must address the rising cost of pharmaceuticals. [Table: see text]
Perspectives on cancer care delivery from oncology patients who experienced unplanned acute care events.
Authors: Kaufmann Tara L. , Rendle Katharine A. , Aakhus Erin , Bilger Andrea , Gabriel Peter Edward , Nimgaonkar Vivek , Shah Arnav , Trotta Rebecca , Barg Frances , Bekelman Justin E. 
Published: October 2019

201 Background: Unplanned acute care is debilitating and burdensome for patients with advanced cancer and their caregivers. There is a pressing need to understand how available evidence-based practices (EBPs) to reduce acute care 1) align with the needs and priorities of patients and 2) are best implemented within large health systems. We are conducting a mixed methods study to assess patient- provider- and system-level factors that shape the decision to seek acute care during active cancer treatment in order to select and adapt EBPs for implementation. Here we present data from patients’ perspectives. Methods: Purposive sampling approach to identify solid tumor cancer patients on active treatment with unplanned acute care events at a large health system from Aug 2018-Jan 2019. We conducted semi-structured interviews to elicit patients’ perspectives on factors that shape their decision to seek acute care and to inform intervention strategies. Results: Forty-nine patients participated in this study. We identify several patient factors that intersect with the decision to seek care: self-management behaviors, guilt, negative ED perception, safety concerns, and trust. Patients attempt self-management prior to contacting their oncology team, which introduces variability in the duration and severity of reported symptoms. Delay is related to patients’ guilt for burdening their oncology team and to provider accessibility. Patients describe a high symptom threshold to seek care that is often coupled with a negative perception of the ED, but do prefer in-person evaluation for new and distressing symptoms for safety. They express a high level of trust in the oncology team and relative distrust of non-oncology providers. Conclusions: Our data suggest a conceptual model for patient factors that drive unplanned acute care. Patients identify three areas for improvement: 1) enhanced peer support and education to manage uncertainty about cancer treatment; 2) accessible portals for patient-clinician communication; and 3) home or clinic-based after-hours oncology symptom management. Interventions to target these needs should address patients’ emotional concerns and be well integrated within the oncology team.
A PROM pilot in GI oncology clinic: Outcomes and lessons in real-world implementation.
Authors: Halbert Brian , Doolin Jim , Tocci Noah Xavier , Zerillo Jessica A. 
Published: October 2019

202 Background: Patient reported outcome measures (PROM) can prolong survival, improve quality of life and reduce ED visits. However, implementation of PROM into practice is challenging. We present the results of a PROM pilot in a tertiary GI oncology clinic. Methods: We recruited a convenience sample of 20 patients undergoing infusional chemotherapy. Patients were English speaking and > 18 years old. We developed a PROM instrument targeting pain, nausea, diarrhea, constipation and fever symptoms in a third party secure online application. Symptoms were scored by frequency and severity on a 5-point Likert scale. The survey was distributed weekly to patients via the patient portal from March to April 2019. Survey results were monitored in real-time. Clinical teams were notified for any symptom score of 4 or 5, increase by 2 or more points between weeks, or self-identified concern. We conducted telephone interviews of non-responders halfway through the pilot to assess reasons for non-response. Results: The mean age was 59 years. Most were female (55%) and self-identified as white (75%). Colorectal (45%) and pancreatic (40%) cancer were the most common cancer types. Most (80%) had metastatic disease and FOLFOX (45%) was the most common regimen. Of the 121 weekly surveys sent, we received 40 responses (33%). Individual response rates ranged from 0% to 100% with a median rate of 25%. Of the 40 responses, 24 (60%) resulted in a clinical trigger. Pain was the most common trigger (n = 15; 63%) followed by self-identified concern (n = 9; 38%). Five triggers resulted in change in management; recommendation of an OTC medication was the most common intervention. There were 6 ED visits or hospitalizations among 5 patients. Of 9 non-responding patients, 4 reported not seeing the e-mail and 3 reported illness as the reason for non-response. All reported continued enthusiasm for the project. Conclusions: Despite known benefits, successful implementation of PROM remains challenging. We found difficulties with automated integration into the electronic medical record and patient response rates. These factors must be addressed to allow a successful PROM program. Despite these limitations, significant enthusiasm remains for the future of PROM.
Integrating spiritual care into an ambulatory cancer center.
Authors: Terry Karen , Piccolino Sophia Tsesmelis , Williams Alaysia , Smith Cardinale B. 
Published: October 2019

205 Background: Spiritual care is identified as a core component of quality oncologic care. Unmet spiritual needs can lead to worse quality of life, lower satisfaction with care, and greater psychological distress. Despite increasing evidence that cancer outpatients also have unmet spiritual needs, professional spiritual care is often limited in the ambulatory setting. Many cancer centers provide access to professional chaplains only while patients are hospitalized. Where chaplain services are available to outpatients, access is often limited. At Mount Sinai, we embedded a full-time professional chaplain in our ambulatory cancer center. This presentation will describe our methods, results, and conclusions from a year of data on outpatient spiritual care referrals. Methods: We identified three sources of referrals to spiritual care: direct referrals from patients’ primary oncology teams, direct referrals from Supportive Oncology/Palliative Care, and automatic referrals through a question about meaning and purpose on our distress screen. We also included the opportunity for patients to self-refer to spiritual care through our distress screen. We collected data on the number of patients identified through these referral sources, time to initial contact, and the validity of the referral as assessed by our chaplain. Results: These three sources resulted in 454 referrals to spiritual care. We screened 1,410 patients through our distress screen and 16% (226) triggered a referral to spiritual care. Distress screen referrals comprised nearly 50% of all spiritual care referrals. In addition, 32% (144) of our referrals came from the patients’ clinical teams and 10% (46) from the Supportive Oncology team. Our chaplain assessed that 31% (141) had a spiritual need that required regular follow-up and 12% (56) required monitoring. Conclusions: Using multiple referral methods we were able to identify a significant number of ambulatory cancer patients with an identified spiritual need. Future projects will look at specific metrics for patient experience, improving chaplain ability to connect with patients, validating our screening question for spiritual distress, and determining an appropriate patient load for an outpatient chaplain.