bluuebunny/crossref_metadata_2025_split huggingface dataset:
Development and testing of patient-reported outcome performance measures (PRO-PMs) for oncology practice.
Authors: Stover Angela M. , Urick Ben , Deal Allison Mary , Jansen Jennifer , Henson Sydney , Miller Robert S. , Smith Tenbroeck , Scholle Sarah Hudson , Chiang Anne C. , Cleeland Charles S. , Deutsch Yehuda Ethan , Zylla Dylan M. , Pitzen Collette , Snyder Claire Frances , McNiff Kristen K. , Krzyzanowska Monika K. , Spears Patricia , Smith Mary Lou , Geoghegan Cindy , Basch Ethan M. 
Published: October 2019

173 Background: Symptom management is a cornerstone of quality oncology practice. ASCO established a Working Group to develop patient-reported outcome performance measures (PRO-PMs) for assessing symptom management. We describe multi-center testing funded by PCORI. Methods: Multi-stakeholder consensus and literature review identified 11 symptoms for testing as potential PRO-PMs. For these symptoms, questions from the NCI’s PRO-CTCAE tool were administered at 6 US academic and community oncology practices. Patients across cancer types completed questions electronically on days 5-15 of chemotherapy cycles. PRO-CTCAE mapped scores were dichotomized to delineate clinically meaningful thresholds (0-1 vs ≥2), and rates were tabulated between practices. Symptoms were selected to become PRO-PMs if clinically actionable and with prevalence ≥20%; between-practice variation was evaluated using χ2. Twelve candidate sociodemographic and clinical risk adjustment (RA) variables were evaluated via Akaike information criterion testing. Risk-adjusted PRO-PM rates were calculated using observed:expected ratios via generalized linear mixed modeling. Results: Among 653 enrolled patients, 607 (93%) completed questionnaires. Four of 11 symptoms met criteria for PRO-PM development: nausea, constipation, insomnia, pain. Four RA variables met inclusion criteria: age, gender, cancer type, insurance type. The Table shows raw and risk-adjusted rates of symptom burden (scores ≥2) for each PRO-PM across practices. Risk-adjustment yielded a modest impact on scores. Conclusions: Oncology PRO-PMs have been developed to quantify the burden of actionable symptoms at the practice level. Collection from patients is feasible. Further refinement is underway prior to submission for endorsement by the National Quality Forum. [Table: see text]
Exploring and supporting older women’s chemotherapy decision-making in early-stage breast cancer.
Authors: Karuturi Meghan Sri , Housten Ashley , Giordano Sharon H. , Hoover Diana , Volk Robert Joseph 
Published: October 2019

181 Background: Few studies have focused on the therapeutic decision-making process in older adults with cancer. This study sought to address this gap by exploring older adult breast cancer patients’ (pts) perspectives on neo/adjuvant chemotherapy, thereby identifying informational needs as they navigate the decision-making process. Methods: Women ≥65 years diagnosed with early stage (I-III) breast cancer were recruited from an academic center following their decision on whether to receive neo/adjuvant chemotherapy. Pts took part in individual semi-structured interviews to explore their perspectives, knowledge, and values. They also completed surveys assessing sociodemographics, health literacy/numeracy, and shared decision-making (SDM-Q-9). Interviews were audio-recorded and transcribed, and analyzed using the Sort and Sift, Think and Shift qualitative approach. Quantitative data was summarized using descriptive statistics. Results: 26 pts completed interviews (age range 65-92; 81% non-Hispanic White; 81% ≥ college degree; 70% single). 14 pts elected to undergo chemotherapy and 11 declined. Most pts had adequate health literacy (mean = 4.31; SD = 1.1 on Single Item Literacy Scale) and numeracy (mean = 4.4; SD = 1.0 on Single Item Numeracy Scale). Pts scored high on the shared decision-making questionnaires (SDM-Q-9, mean = 5.3, SD = 0.7). Thematic analysis uncovered several commonalities regardless of the decision. Pts sought information regarding their disease/treatment, but in some instances were confused regarding the objective of chemotherapy. They often chose treatment outside of the physician’s recommendation, and referenced the subjective experience of friends/family members with cancer. Self-perception of health and the side-effects of chemotherapy were also key factors. Pts also placed importance on the maintenance of quality of life throughout the treatment trajectory. Conclusions: Decision-making strategies in older patients were shaped by knowledge, values and the anectodal experience of others. These discussions will subsequently shape the creation of a decision support tool for older pts and physicians to better facilitate the shared-decision making process.
Multidisciplinary cancer teams and utilization of resources for metastatic breast cancer (MBC): A landscape analysis.
Authors: Plotkin Elana , Gandee Marianne , Lucas Lorna 
Published: October 2019

186 Background: An estimated 250k Americans are currently living with MBC. While breast cancer is a high-profile disease receiving significant public funding, patients with metastatic breast cancer face unique challenges. ACCC seeks to expand the conversation to address gaps between early & metastatic disease and improve the management of MBC in the community setting. Communication challenges that cancer care teams face with MBC patients include: using a tailored and thoughtful approach, balancing hope and realism, patient engagement during conversations, incorporating principles of shared decision making, patient financial concerns, and family/caregiver involvement. Methods: An environmental scan was completed of nationally available resources. A survey on MBC Communication strategies was administered in a variety of oncology provider settings from Dec. 2018-Jan 2019. Results: Patient psychosocial needs were identified as the top challenge for working with MBC patients vs. Stage 1-3. 57% reported difficulty managing patient expectations, 55% reported patient financial concerns. While 66% of cancer programs offer a general breast cancer support group, only 27% offer a Stage 4 group. 59% of respondents rely on casual conversations with patients to assess what they want, only 34% ask patients to define what quality of life would mean for them. 33% document goals in the EMR. Over 150 free resources specific to MBC were categorized from diagnosis through hospice, resulting in a curated online library that clinicians can use with their patients. Conclusions: This patient population should be given specialized care to address their unique diagnosis and improve communications with their care team. The ACCC Resource Library gives both low and highly resourced programs access to more supportive care tailored to metastatic breast cancer.
Comparing clinician- and patient-rated performance status and association with psychosocial status in advanced genitourinary cancer.
Authors: Bergerot Cristiane Decat , Bergerot Paulo Gustavo , Philip Errol James , Hsu Joann , Dizman Nazli , Salgia Meghan , Battle Dena , Vaishampayan Ulka N. , Loscalzo Matthew J. , Dale William , Pal Sumanta K. 
Published: October 2019

195 Background: Assessing patient-reported outcomes (PROs) is a critical element of comprehensive cancer care. Performance status (PS) is a widely used clinical measure to assess patients’ general well-being and, in clinical trials, provide insight into patients’ quality of life (QOL). This study compared PS as reported by clinicians and by patients, and explored whether associations between PS, QOL and psychological symptoms differed by patient or provider. Methods: This cross-sectional survey study enrolled patients with metastatic genitourinary cancers at a single institution. Patients completed measures assessing their PS (self-reported version of the Eastern Cooperative Oncology Group, ECOG), QOL (FACT-G) and psychiatric symptoms (PROMIS-Anxiety and Depression). Clinical data, including ECOG PS by physician rating, was extracted from medical records. Multivariate analysis was used to determine the association between PFS, QOL and psychological symptoms. Results: A total of 83 patients were enrolled. Median age was 67 (range, 31-91), 74% were male and 74% were married. Patients were diagnosed with advanced renal cell carcinoma (RCC; 54%), urothelial cancer (UC; 23%), or prostate cancer (PC; 23%) and were predominantly receiving first (39%) or second line (25%) therapy. Physicians were more likely to classify patients as ECOG PS 0 as compared to patients themselves (90% versus 63%, P = 0.01). Worse ECOG PS by patient-report was significantly associated with poorer psychosocial outcomes, including increased anxiety and decreased social well-being (P = 0.001 for each). In contrast, there was no association between physician-reported PS and these outcomes. Conclusions: This is the first study comparing PS as reported by clinicians and patients. Physicians appeared to overestimate ECOG PS when compared to patient self-rating, and this may have a downstream impact on the accuracy of PS for other psychosocial outcomes. This has potential implications for clinical trials in which PS is used for eligibility/stratification. This phenomenon will be examined prospectively in an upcoming SWOG trial in advanced RCC.
Distress screening in cancer survivorship.
Authors: Brockway-Marchello Julia P. , Theroux Haley Hines , Piccolino Sophia Tsesmelis , Yang Qiuchen , Smith Cardinale B. 
Published: October 2019

197 Background: Cancer survivors have physical, psychosocial, emotional and financial needs that vary in prevalence and may differ from needs of patients on active cancer treatment. Distress screening is mandated for cancer program accreditation and identifies, addresses and monitors the needs of patients. There is a paucity of data on the clinical application of distress screening among survivors. We used a validated distress screening tool to conduct a needs assessment of cancer survivors in the solid oncology clinic. Methods: The Cancer Support Source Distress Screening tool is an 18-item questionnaire given to patients on their 2nd and every 3 month medical oncology clinic visit to assess depression and distress. We merged patient survey data (patients completing ≥ 2) with the cancer registry to identify cancer survivors from July 2015 to October 2018. We performed bivariate and multivariate analysis evaluating change in depression and distress scores over time. Results: 92 patients were identified. The table indicates changes in depression and distress scores by cancer. Depression scores improved for most cancer types with an improvement in distress scores across all cancers. Emotional/mental health, communication, provider relationship, system of care, body image and social support were associated with significant changes in survivorship concern. We are completing a multivariate analysis controlling for sociodemographic factors to evaluate change in depression and distress scores across the survivorship trajectory. Conclusions: A distress screening survey may be a useful tool in assessing the unmet needs of cancer survivors. Identifying prevalent domains of survivorship issues can highlight areas of greatest perceived need and can guide quality improvement initiatives within a cancer program. [Table: see text]
Determining the influence of patient-perceived curability on advance care planning in patients with cancer.
Authors: Pywell Cameron , Gilbert Aidan , Charles Rachel , Ye Star , Rocque Gabrielle Betty 
Published: October 2019

198 Background: Advance Care Planning (ACP) allows patients to express their wishes regarding medical interventions when they are no longer able to make decisions. We hypothesized that among cancer patients treated at the University of Alabama at Birmingham (UAB), those who perceived their disease to be incurable were more likely to have an ACP. Methods: This cross-sectional study utilized data from patient reported outcome (PRO) surveys administered at the UAB outpatient oncology clinic. PRO responses included Eastern Cooperative Oncology Group (ECOG) performance status, perceived curability, and ACP status. Clinical and demographic information abstracted from the electronic health record included sex, stage, disease progression, phase of care (treatment: diagnosis to 1 year; survivorship: 1 year to 6 months before death; end of life: 6 months prior to death), diagnosis date, race, and marital status. The association between perceived curability and ACP was evaluated using likelihood ratios (LR) and 95% confidence intervals (CI) from generalized linear models with a log link and Poisson distribution with robust variance estimates adjusting for sex, race, stage, phase of care, ECOG, and marital status. Results: We analyzed PRO responses from 818 patients with a variety of different cancers. The majority of patients were female (68%), white (74%), were married (61%), had an early stage (0/I/II/III) cancer with no progression (56%), and had an ECOG of 0 or 1 (74%). Gynecologic (30%) and hematologic (28%) were the most common malignancies. The majority of patients were in the treatment (46%) or survivorship (48%) phase of care. Most patients did not have an ACP (59%). The majority of patients believed that their cancer was curable (61%). In adjusted models, there was no difference in ACP status between those believing their cancer was curable versus incurable (LR: 0.97, CI: 0.77-1.23). Conclusions: The absence of difference in ACP with respect to perceived curability suggests that patients’ completion of ACP depends on other factors, which may be more patient-specific rather than disease-specific. Our data reinforce the importance of addressing ACP for all patients.
Experiences of pediatric lymphoma patients undergoing treatment in Malawi across all PROMIS-25 domains.
Authors: Ellis Grace K , Reeve Bryce B , Itimu Salama , Salima Ande , Banda Grace , Manda Agness , Manthalu Olivia , Seguin Ryan , Gopal Satish , Westmoreland Katherine D 
Published: October 2019

203 Background: Health-related quality of life (HRQoL) is an important outcome in cancer care and research, but such data from sub-Saharan Africa are scant. We translated and validated the Pediatric Patient-Reported Outcome Measurement Information System (PROMIS)-25 questionnaire for use in Malawi. Methods: We administered the Pediatric PROMIS-25 at baseline, mid-treatment, treatment completion, and follow-up to pediatric lymphoma patients receiving care in Lilongwe. Domain scores were transformed into PROMIS T-scores. Differences in follow-up and baseline values were calculated and compared to published minimally important difference (MID) estimates of 3 points. Results: Eighty-one questionnaires were completed at diagnosis, 41 at mid-treatment, 24 at treatment completion, and 25 at follow-up [Table]. At baseline, 57 (70%) were male, median age was 11 (IQR 9-13), and 50 (62%) reported Pain Intensity ≥8. Mobility, Anxiety, Depressive Symptoms, and Pain Interference improved during treatment, but seemed to worsen at treatment completion. At follow-up, substantial improvements in HRQoL were reported [Table]. Conclusions: Despite poor HRQoL at baseline, improvements in all measured domains exceeded accepted MID thresholds. This suggests treatment led to meaningful improvements in HRQoL, but high mortality in data may reflect a survivor effect. Incorporating serial HRQoL assessments in emerging cancer programs in sub-Saharan Africa should be a regional priority. HRQoL T-scores during care, median (IQR). Lower Mobility and Peer Relationship scores reflect worse functioning; higher symptom scores reflect worse symptom burden. [Table: see text]
Use of remote symptom monitoring with breast cancer survivors using patient reported outcome measures through Epic Mychart.
Authors: Terstriep Shelby A. , Wacker James , Quinlan Charissa , Pochardt Kiara , Basch Ethan M. 
Published: October 2019

208 Background: Electronic patient-reported outcome (PRO) monitoring has been found to improve quality of life and overall survival in patients with metastatic cancer patients during active treatment. There has been limited data using PROs to enhance clinical outcomes in cancer survivorship. This pilot study of breast cancer survivors assessed utilization and satisfaction of proactive PRO symptom and adherence monitoring through an EHR patient portal (EPIC MyChart). Methods: Eighty breast cancer survivors who had completed surgery, chemotherapy, and/or radiation and received a survivorship care plan were randomized 1:1 either to usual care or PRO monitoring. The PRO group received questions from the NIH PROMIS toolkit through EPIC MyChart monthly between visits for 6 months. The triage nurse received an EPIC Inbasket alert if the survivor reported moderate to severe symptoms, had not taken their medication(s), or reported they would like to speak to a nurse. Participants in the control group were assessed for sadness, anxiety and satisfaction with provider communication at their usual follow visits. Results: Of 239 surveys sent out, 214 (90%) were completed. Eighty-five (36%) surveys triggered Inbasket alerts to the nurse. The most common nursing response to alerts was calling the patient for counseling/education. Compared to control, the PRO monitoring group exhibited no difference in satisfaction at 3 months, but had significantly higher scores at 6 months for satisfaction with communication (P=0.005) and monitoring (P=0.002). Anxiety scores did not differ between groups. Conclusions: Remote electronic monitoring of symptoms and adherence through the EHR bet was feasible with high completion rates, improved satisfaction, and did not increase anxiety in breast cancer survivors. Follow up work is assessing PRO monitoring to improve efficiency of following cancer survivors, and implementation of survivorship care plans.
Improving patient experience in health care and oncology: A scoping review.
Authors: Grendarova Petra , Yannitsos Demetra Hariklea , Vaska Marcus , Barbera Lisa Catherine 
Published: October 2019

209 Background: Patient-reported experience measures (PREMs) gather information directly from patients and capture their perspectives on their health care. Deficiencies identified by PREMs can lead to quality improvement (QI) interventions. The purpose of this review was to identify published and unpublished evidence on initiatives aimed to improve patient experience, to identify their areas of application and their overall impact on patient experience. Methods: We conducted a systematic literature review using MEDLINE (Ovid), EBM Reviews, HealthStar, PsycINFO, PubMed, PubMed Central, CINAHL, MEDLINE (Ebsco), Psychology & Behavioral Sciences, TRIP Database, EMBASE and Web of Science databases and several sources of grey literature. Inclusion criteria required the studies to evaluate an intervention or a systematic change aimed to improve patient experience and measured by a specific PREM. The search was limited to English language reports published between 1998 and 2018. Of the initial 780 articles, 318 were included in abstract reviews. 304 abstracts were excluded leaving 44 records for full text review. Results: 21 records were included in the final analysis (20 journal articles and 1 web report). Publication dates ranged between 2007 and 2018 in the USA, UK, Norway, Denmark, Belgium and Bangladesh. There were 8 QI initiatives, 6 randomized studies, 1 non-randomized trial, 3 mixed methods, 2 repeated cross-sectional studies and 1 national patient experience model. Areas of focus included hospital care, surgery, internal medicine, primary care and oncology. Nine studies had programmatic interventions and 12 had specific interventions. All specific interventions reported positive effects. Outcomes were variable in programmatic interventions, including 5 studies reporting positive effects, 3 neutral and 1 mixed effects. Conclusions: The effect of specific interventions aimed to improve patient experience is positive. There is limited data on the effect of programmatic initiatives and the factors that drive the improvement in patient experience. Such initiatives are needed to understand their impact on patient experience and person-centered care.
Utilizaton of patient reported outcomes measures (PROM) to characterize symptom burden and adherence associated with oral oncolytic therapy.
Authors: Mackler Emily R. , Weis Taylor , Procailo Kelly Marie , Marshall Vincent D. , Farris Karen B. 
Published: October 2019

210 Background: The use of patient reported outcome measures (PROMs) to monitor cancer treatment tolerability has been shown to positively impact outcomes. The purpose of this study was to characterize the incidence and severity of side effects, patient self-management confidence, and medication adherence in patients receiving oral oncolytic therapy. Methods: This multicenter, cross-sectional, observational study was conducted across 6 Michigan oncology practices from July 2016-December 2018. Patients were eligible to complete PROMs during the course of their treatment if they were receiving an oral oncolytic medication (excluding endocrine therapy). Results: There were a total of 2252 PROMs completed in 695 patients. Patients were 48% female, a median age of 69 years, and most commonly receiving treatment with capecitabine (18%), palbociclib (10%), and lenalidomide (9%). 54% of PROMs had at least one Edmonton Symptom Assessment Scale (ESAS) symptom rated as moderate or severe. Patients indicated the presence of a most bothersome symptom (MBS) in 35% of PROMs. Most common MBSs were fatigue (26%), pain (16%), constitutional symptoms other than fatigue (15%), and nausea/vomiting (14%). Non-adherence was reported in 20% of PROMs. ESAS symptoms rated as moderate or severe, the presence of a MBS, and lower confidence scores all correlated with medication non-adherence. Conclusions: Patients taking oral oncolytics for their cancer treatment experience a high symptom burden with more than 50% experiencing a moderate to severe symptom. Optimizing symptom management and providing patient education that increases patient confidence in self-management may improve medication adherence and patient outcomes.