bluuebunny/crossref_metadata_2025_split huggingface dataset:
Association of treatment type with patient-reported quality of life in cancer distress screening.
Authors: Roy Mohana , Rosenthal Sarah , Shah Manan P , Khaki Ali Raza , Bozkurt Selen , Seto Tina , Blayney Douglas W. , Hernandez-Boussard Tina , Ramchandran Kavitha 
Published: September 2021

178 Background: Routine distress screening is recommended for all patients with cancer. In 2015, Stanford Cancer Center implemented such screening using a modified PROMIS-GH questionnaire. With the recent growth of oncology drugs, novel medications have been perceived as better tolerated than chemotherapy. We analyzed patient reported quality of life with global mental health (GMH) and global physical health (GPH) scores for different medication classes. Methods: Patients who completed a questionnaire at our center between 6/1/2015 and 12/31/2020 were included. Medications were classified as chemotherapy, targeted therapy, endocrine therapy, or immunotherapy using guidance from SEER.Rx ontology. Baseline (B) and treatment (Tx) questionnaires were completed before any treatment initiation of each medication type and within 3 months of each treatment, respectively. GPH and GMH scores were calculated using PROMIS T-scores stratified by medication type for B and Tx questionnaires. We analyzed for differences based on demographics and diagnoses. Clinically significant differences were defined as a 3-point difference in T-scores, which then prompted statistical comparison with t-tests to compare the B and Tx scores to each other and to the US population mean of 50. Results: We analyzed 28,180 questionnaires from 11,644 patients (59% women, median age 64; 23% stage I and II, 12% stage III, 23% stage IV, 51% missing). B and Tx mean GMH scores did not differ clinically compared to the US mean or to each other (baseline: 49.03 +/- 9.16, post: 48.5 +/- 9.1). However, both mean GPH scores were statistically and clinically lower (baseline: 44.2+/- 10.38, post: 42.4 +/- 10.1,) compared to the US mean (p < 0.001). Changes in scores by treatment category are shown in the table below. There was a statistically significant difference in post-treatment GPH scores for chemo-immunotherapy patients when compared to both corresponding baseline scores (p < 0.001) and post treatment chemotherapy alone scores (p < 0.001). There was no clinically significant difference in scores when stratified by age, sex, primary language, insurance, disease stage or type. Conclusions: In this large retrospective study, we found that patients being treated for cancer did not report worse GMH scores compared to the US mean population, but do report lower GPH scores. While most scores varied little relative to other treatment types, those receiving chemo-immunotherapy had lower GPH scores when comparing baseline to treatment and to the US mean, warranting further investigation, given increasing use.[Table: see text]
Value and use of patient reported outcomes in sarcoma clinic through GetWell Loop app.
Authors: Voshtina Ensi , Charlson John A. 
Published: September 2021

179 Background: Symptom monitoring in cancer care through patient reported outcomes has been used as an approach to improve symptom detection and communication. Through monitoring of patient symptoms via a systematic way, previous studies have shown a reduction in ED visits and hospital admissions, an enhancement in patient-clinician communication and overall patient satisfaction and wellbeing. In this study, we evaluated outcomes of patient reported data by using the GetWell Loop app to help determine if it facilitates cancer care and improves clinical outcomes. Methods: We performed a retrospective, single-center analysis of sarcoma patients age > 18 who between December 2019 to January 2021 received systemic treatment and were enrolled to use GetWell Loop app to report their treatment related outcomes. We asked patients how they are feeling on a systematic basis post treatment by using a series of questions related to their therapy and potential symptoms. Through the use of GetWell Loop, patients are able to record symptoms information and prompt evaluation by a healthcare provider if they report severe or rapidly changing symptoms. Descriptive statistics were used to summarize use of the GetWell Loop through patient surveys, app generated data, and data available in EPIC electronic medical record. We noted the number of yellow (moderate) and red (severe) alerts generated by patient responses and the corresponding alert trigger to health care provider response. Healthcare provider communication and interventions were recorded, as were hospitalizations and ED visits while using the app. Results: A total of 75 patients were invited to join enrollment. Of those, 54 activated the app, with an activation rate of 72%. Engagement rate was 61% and 74 total alerts were generated. Of the severity of symptoms leading to an alert, 28% were red alters and 72% were yellow alerts. Red alerts most commonly comprised of decreased fluid intake, constipation, and fevers. The majority of red alert symptoms lead to an intervention from nursing staff that started with a phone call, while a minority of interventions were in app messages with the patient. Five red alerts led to an ED visit. The majority of yellow alert symptoms were addressed through in app messages. Both clinical staff and patients felt it helped them stay connected. Patients were most adherent with the first treatment. Patient satisfaction was 87.5% with the app usage. Conclusions: Using patient reported outcomes by using the GetWell Loop app yielded an overall positive patient experience. It provides an opportunity to intervene early with high risk patients and prevent ED visits. Focusing on the first cycle of a regiment and subsequent cycles if high risk seemed to provide the most benefit. There is utility to expand to other disease teams and use the app for survivorship support as well.
Development of a virtual intervention for patients with lung cancer transitioning to surveillance after curative treatment.
Authors: Massad Katina , Traeger Lara , Greer Joseph A. , Temel Jennifer 
Published: September 2021

181 Background: Patients with lung cancer who are treated with curative intent are rarely included in quality-of-life (QOL) intervention research in cancer, and the transition from treatment to surveillance is an understudied phase in lung cancer. Given the high risk of recurrence in this population, we aimed to 1) characterize the QOL challenges of patients with lung cancer who complete curative treatment and 2) develop and refine an intervention to support patients during their transition to surveillance. Methods: We first conducted semi-structured interviews to explore the QOL challenges of patients in transition from lung cancer treatment to surveillance (n = 12). Interviews were transcribed, coded, and analyzed using a thematic analysis approach. Results were used to develop the content, timing, and delivery of a cognitive behavioral intervention to enhance patient QOL during the transition to surveillance. We conducted an open pilot with patients within 3 weeks of completing lung cancer treatment (systemic therapy +/- radiation) to test and refine the intervention (n = 5). Mixed methods data were collected to evaluate intervention feasibility, acceptability, and areas for refinement. All study procedures were conducted at an academic medical center in the New England region. Results: Qualitative study results indicated that during the transition to surveillance, patients with lung cancer (6 female, 6 male; age range: 26-76) faced unexpected challenges in coping with residual symptoms (e.g., dyspnea, fatigue), uncertainty about future health, and changes in close relationships. Results were used to develop a 5-session intervention to address patient challenges with a coping skills framework that balanced acceptance-and change-oriented approaches. Study clinicians delivered intervention sessions remotely (video or telephone). Of 6 patients approached, 5 enrolled in the pilot (all female; age range: 62-73; 1 declined due to time commitment). Pilot patient feedback indicated that the intervention timing and content targeted patients’ current needs and concerns. Patients valued the opportunity to normalize and address current challenges and to cope with difficult emotions. Results suggested further refinements to the timing for patient recruitment and the order of session content to enhance skills uptake. Conclusions: Patients who are treated for lung cancer with curative intent may face unexpected QOL challenges related to residual symptoms, health uncertainty, and changes in close relationships during the transition to surveillance. Results enhance our understanding of lung cancer survivorship and provide a framework for addressing QOL challenges in this population. Remote delivery of this manualized intervention supports scalability for survivors of cancers with high risk of recurrence. This model will be tested further in a larger scale efficacy trial. Clinical trial information: 04450043.
Patient and clinician perceptions of a digital patient monitoring program in the community oncology setting: Findings from the Texas Two-Step Study.
Authors: Patt Debra A. , Patel Amila , Wilfong Lalan S. , Books Holly , Ortega Lance , Franklin Max , Croft Sarah , Stover Angela M. , Boren Rhonda , Basch Ethan M. 
Published: September 2021

189 Background: Digital monitoring strategies that include electronic patient reported outcomes (ePRO) measures to monitor symptoms among cancer patients have been shown to be effective in improving patient outcomes in a large academic setting and across several smaller multi-center trials. However, demonstration of clinical utility in the real-world setting must incorporate patient and provider perspectives of ePRO programs to ensure successful implementation. We sought to understand perceptions among patients and clinicians in ePRO digital symptom monitoring program. Methods: Texas Two-Step is an ongoing hybrid implementation-effectiveness study of Navigating Cancer’s ePRO digital monitoring program at Texas Oncology. Patients initiating new systemic therapy for their cancer diagnosis were introduced to the program by their oncologist and enrolled in the program by nursing staff for weekly reporting of symptoms based on a modified version of NCI’s PRO-CTCAE instrument. Feedback surveys were administered to both patients and clinic staff after 6 months of implementation of the program to evaluate the overall experience with the program. Results: 1040 (23.5%) patients and 215 (12.4%) clinicians completed the feedback survey. Of the patient responders, 90% found the program very or somewhat easy for reporting symptoms, 85% moderately-extremely beneficial for having symptoms addressed, and 84% moderately-extremely interested in utilizing the program for future treatments. Of the clinician responders, 73% indicated that that they had a good understanding of the benefit of the program; 70.6% felt confident in their ability to interpret patients’ ePRO responses; 80.3% felt confident in their ability to discuss the program with patients; 71.2% confident in their ability to counsel patients based on ePRO responses; and 55.3% felt the program enhanced communication with patients. Additionally, 59% of clinicians felt the program was beneficial for patients. Conclusions: Patients have a more favorable perception of the benefit of the ePRO program than clinicians. Methods to reduce staff burden and reinforcement of program benefits during training and implementation are imperative to improve clinical utility and will be studied further as the program is optimized. As implementation occurred during the COVID-19 pandemic, this may impact perceptions regarding the tool.
Heart rate: Activity mismatch as a prognostic marker of survival in metastatic non-small cell lung cancer (NSCLC).
Authors: Puri Sonam , Jo Yeonjung , Haaland Benjamin , Kerrigan Kathleen Claire , Patel Shiven B. , Coletta Adriana M , Moynahan Kelly , Cannon Laura , Gumbleton Matthew , Hillman Nicole , Embrey Kelsey , Akerley Wallace L. 
Published: September 2021

190 Background: Performance status (PS) is the foundation for clinical trial eligibility criteria and the basis for treatment decisions in the treatment of NSCLC, but it is limited by subjectivity and potential miscommunication between patient, physician, and family. Activity trackers use is widespread and offers the potential to collect a broad range of patient generated data (steps, activity, heart rate, calories, sleep, etc.) to supplement the assessment of PS while minimizing subjectivity. Here we evaluated a clinical observation that elevated heart rate at rest is prognostic of survival. Methods: Patients with metastatic NSCLC were asked to participate in a prospective, observational study of potential prognostic survival factors that included wearing a FitBit tracker with a goal to measure HR-Activity mismatch measured by 2 parameters: 1) Heart Rate-Activity Mismatch (HAM) by percent of time when HR is high and activity is moderate or low over a day; 2) inappropriate HR (iHR) is the ratio of time with elevated HR/sedentary minutes average over a week. Correlation and regression analyses were performed for the initial 55 patients enrolled prior to COVID restrictions using data limited to the average of 7 days with wear > 500 minutes closest to date of consent. Results: We enrolled 55 patients with metastatic NSCLC. There were 35 females and 20 males with a median age of 67 years. A majority of patients were never (38%, n = 21) or former smokers (40%, n = 22); adenocarcinoma (83%, n = 83%) was the most common histology. 30% (n = 17) patients were on 2nd or greater line of therapy. 52 were included for survival analysis and 21 expired with median survival 226 days (149, NA). As average daily steps increased by 1000, the hazard of death decreased by a factor of 0.65 (95% CI: 0.45, 0.93, p = 0.018). As daily average distance increased by 1 mile, the hazard of death decreased by 0.55 (95% CI: 0.33, 0.91, p = 0.019). For HAM, the risk of death increased by 1.14 (95% CI: 1, 1.13, p = 0.046) for every 10% increase in HAM. For iHR < 1 (i.e. high HR when sedentary), the risk of death was 2.84 (95% CI: 1.05, 7.67, p = 0.04) compared those with iHR > 1. Steps, Distance, HAM and iHR were not statistically different by gender. Conclusions: Tracker-based measures of steps/distance and HR-Activity are prognostic of survival in NSCLC and may be useful to supplement evaluation of PS in clinical trials and practice.
Applying treatment advances in castration-resistant prostate cancer: The influence of serial digital education on the uro-oncology team.
Authors: Ackbarali Tariqa , Turell Wendy , del Nido Elizabeth L. , Shore Neal D. 
Published: September 2021

20 Background: Improvements in the understanding of prostate tumor development have spurred advances in biomarker testing and new therapies for prostate cancer, providing clinicians with expanded testing and treatment options. However, these changes have led to competence gaps regarding the use of biomarker testing, integration of PARP inhibitors, application of new data for nmCRPC and mCRPC, and adverse event management. To address these needs, a serial educational initiative was designed for the urology-oncology team. Methods: A 4-part CE activity was launched live-online in December, 2020, and remains on-demand through December, 2021 at UroCareLive.com and OMedLive.com. The activity was launched in partnership with Large Urology Group Practice Association (LUGPA) and included case presentations, live polling, and Q&A. Knowledge and competence questions were administered pre-activity, immediate post-activity, and 2-months post-activity. Patient and clinical practice-impact questions were also asked at the 2-month follow-up. Data from these questions were analyzed to determine engagement and clinical impact. Results: To date, 761 clinicians have participated in the activity. All 12 CE test questions reflected improvements in knowledge and competence, 11 of which were statistically significant. Questions focused on: genomic testing, biomarker analysis, recent clinical trial study results, newly approved therapies, and adverse event management. At 2-mos. follow-up, 70% reported improved behavioral impact on clinical practice and 63% reported impact on patient experience and outcomes. Clinicians provided write-in examples of these changes, illustrating improvements in patient-reported satisfaction, genetic testing, and use of newer therapies, including PARP inhibitors. Practice pattern questions pertaining to biomarker testing and the use of emerging therapies showed the majority of post-program respondents (42%) preferred to utilize blood/serum-based biomarker tests for their patient vs urine- or tissue-based tests. The greatest reported challenges to biomarker testing were affordability (30%) and lack of guideline clarity (23%). The top 2 barriers to adoption of new agents were reported as lack of awareness and lack of experience (32% and 20%, respectively). Conclusions: The activity successfully improved uro-oncology team knowledge of genetic testing and newer therapies to manage castration-resistant prostate cancer. Learners demonstrated significant improvements in competence concerning biomarker testing, treatment personalization, and adverse event management. Open-ended responses to behavioral impact questions illustrated improvements in biomarker usage, application of newer therapies, and confidence in patient counseling regarding treatment options.
The benefits and burdens of patient advocacy.
Authors: Fuld Nasso Shelley , Porter Laura Diane , McNiff Landrum Kristen K. 
Published: September 2021

204 Background: Patient advocates share their time and experience to improve cancer research, care, and support. Advocacy can be rewarding and empowering, and survivors and caregivers express a variety of reasons for engaging in advocacy. Yet, advocacy can also come with mental and emotional costs. Challenges include the grief of losing friends to cancer, the related “survivors’ guilt”, and the burden of repeatedly reliving their experience. The National Coalition for Cancer Survivorship (NCCS) conducted a survey to better understand the experience of patient advocates, and actions that organizations can take to recognize and support advocates. Methods: NCCS convened two focus groups with 10 advocates (the “working group”) to understand factors that contribute to advocates feeling rewarded or burned out from advocacy. We reviewed the transcripts to identify themes and reviewed the literature. We developed a survey and included a validated, non-proprietary, single-item burnout measure used for health care professionals. We built the survey online and tested with select working group members. We disseminated the survey to NCCS’ advocacy network, and working group members shared with their networks. Results: As of June 1, we received 176 responses, with the survey will open for another week. The initial data show that the vast majority of respondents find their advocacy work rewarding (97%), empowering (93%), and a positive impact on their lives (96%). At the same time, 29.5% of respondents indicated they have symptoms of burnout, including emotional and physical exhaustion. Respondents report that their advocacy work results in exhaustion (50.7%), sadness (41.1%), and anxiousness (28.7%). More than a third (36.7%) said that grief makes it hard to maintain their work as advocates. A majority manage the demands of their advocacy work by practicing self-care (66.6%) and using coping strategies (62.5%). Advocates shared the specific practices and strategies they used. Less than half (42.5%) said they set boundaries between their advocacy work and their personal life. The final analysis of the survey data will be complete by the end of June 2021. Conclusions: The phrase, “Nothing about us, without us,” has guided the inclusion of patient and caregiver voices in the design of research, care delivery, research grant review, quality measurement, and other aspects of cancer care and cancer research. Yet organizations that ask for the mental and emotional labor of advocates, including patient organizations, researchers, health care professionals, government institutions, and pharmaceutical companies, should understand the costs to advocates and how to best support them. As one respondent said, “Perhaps organizations could set the stage for this work by openly validating the toll that cancer itself takes, and acknowledge that advocacy takes energy and commitment, which may not always be possible to sustain in the face of ongoing treatment or other life complications.”
An evaluation of patient workflow in hematology clinics at a university hospital referred for the workup of monoclonal gammopathy of undetermined significance (MGUS).
Authors: Kumar Swarup , Kulkarni Radhika B , Ozcan Gonca , Tipirneni Asha , Vankina Ritika , Baker W. Jeffrey 
Published: September 2021

207 Background: Monoclonal Gammopathy of Undetermined Significance (MGUS) is an asymptomatic premalignant condition that can be a precursor to multiple myeloma and lymphoproliferative disorders. There exists no best practice for the workup of MGUS, despite the number of patients diagnosed every year. We evaluated the workup of MGUS patients at a University Hospital Hematology clinic before and after implementation of an algorithm based on the Mayo Clinic Risk Stratification Model. Methods: This was a single-center IRB-approved retrospective study. Charts of 132 patients referred for MGUS were reviewed across two groups (A: June 2019 -May 2020 and B: June-Dec 2020). Use of the Mayo Clinic Risk Stratification Model for MGUS was implemented in May 2020. Data regarding initial work up, bone marrow studies and imaging were collected. Statistical analyses were performed using R software for computing (4.0.4). Results: Patient demographics and those who did not need further work up per the algorithm are summarized in table. All 86 new (100%) referrals had an initial CBC, creatinine, calcium, SPEP, and IFE while 7(8.1%) did not have an FLC assay. 43(50%) patients had a 24-hour urine protein electrophoresis. 65.1% (56/86) [group A: 26; group B: 30] met the criteria for no extended workup; 39.3% of these (22/56) underwent imaging while 7.1% (4/56) underwent bone marrow exam. After implementation of the algorithm, the number of patients who underwent imaging studies decreased from 50% (13/26) to 30% (9/30). Skeletal survey was the most ordered imaging modality (90.1%,20/22). Conclusions: Our study highlights the overutilization of imaging studies in low-risk MGUS patients. Approximately 50% of patients with MGUS are low risk with a lifetime risk of progression being less than 2%. In these patients avoiding extensive testing will minimize costs without adversely affecting clinical outcomes. We recommend a dedicated MGUS clinic to improve workup and monitoring of these patients. [Table: see text]