bluuebunny/crossref_metadata_2025_split huggingface dataset:
Effect of physician-level performance feedback on pattern of structured cancer stage entry.
Authors: Pandya Chintan , Alongi Alex , Dougherty David W. 
Published: April 2017

141 Background: In contrast to unstructured free text, structured entry of cancer type and stage facilitates easy utilization of this clinically important data to accurately identify patient population, measure and report performance on outcomes and quality of care as well as for various clinical decision support systems. There is significant variation in physician utilization of Electronic Medical Record based staging modules which capture the data in structured form. The aim of study is to increase structured cancer staging by providing performance feedback to individual physicians. Methods: An EPIC based physician performance feedback report was developed consisting of staging tool utilization performance captured by percentage of staged patients out of all the patients seen by the provider as well as the MRN link (to act upon) of the un-staged patients with stageable cancer diagnosis using criteria: 1) un-staged cancer on the problem list 2) active treatment plan and 3) seen by provider in last one year. Reports were sent monthly to the providers starting 11/1/2015. Pre-intervention structured staging rates were compared with 6- and 12-month post-intervention rates. Results: EPIC patient data was used to determine the number of patients eligible for staging. In 12 months prior to the intervention, 36% (n = 414/1164) of patients eligible for staging were staged in the structured staging module. After the intervention, the 6- and 12-month staging rates were 60% (n = 836/1387) and 68% (n = 1084/1585), respectively, suggesting an absolute improvement of 89% in structured stage entry. Conclusions: Performance feedback to oncology providers resulted in behavior change and dramatically improved rates of structured cancer staging. Availability of such structured data is essential for development, implementation and evaluation of various quality improvement interventions and strategies such as quality reporting, outcomes analysis, practice patterns, and other population health initiatives. Incremental and large-scale improvement in care processes and outcomes may be achieved through such individual-level feedback mechanisms and contribute to learning health care systems.
The patient experience: Patient characteristic differences in response.
Authors: Flaherty Stephen , Barysauskas Constance , Catalano Paul J. 
Published: April 2017

144 Background: Understanding and addressing patient experience (PX) is an integral part of oncology care. The Press Ganey Outpatient Oncology instrument is used to better understand PX and performance differences at a large ambulatory oncology center. We investigated select patient characteristics of response among all eligible patients, the surveyed sample, and survey respondents. Methods: Over a six month period at a large ambulatory oncology center, 26,660 patients were eligible to report their PX. 11% of patients were identified following the center’s sampling criteria, of which Press Ganey applied their sampling strategy. Thus, 2,857 patients were randomly selected and sent the survey instrument, of which 828 patients responded. Patient characteristics of the three cohorts were compared across the center and by disease center. Results: Surveyed patients were a representative sample of eligible patients, as surveyed patients were of similar age (NS), gender (NS), education level (NS), and primary insurer (NS). In some dimensions, responders were not a representative sample of eligible/surveyed patients. Respondents were slightly older (p < 0.001), more often male (NS), more college educated (NS), and more frequently had a primary insurance of Medicare (p < 0.001). Similar population differences continued among eligible, surveyed and responders, in further comparisons by disease center. Conclusions: Population based sampling allowed the opportunity to investigate accuracy of the sampling strategy and the ability to identify a representative sample of patients across the oncology center. A comparison across the oncology center and disease centers revealed we cannot assume respondents are similar to the eligible and surveyed populations, thus we caution all assumptions made with unadjusted PX comparisons. Further research allows the opportunity to continuously update/improve the sampling strategy and administer electronic surveys to identify a more representative sample better positioned for future quality improvement opportunities. [Table: see text]
Validation of two cancer care plan communication tools.
Authors: Staunton Hannah , Yagnik Supriya , Williamson Nicola , Spencer Holly , Kaur Sharan , Bennett Bryan , Donelson Sarah , Jagun Dayo , Goertz Hans-Peter , Stein Alisha 
Published: April 2017

145 Background: Patient-provider communication is recognized as allowing patients to become more active within the treatment process and treatment related decisions. This paradigm shift of involving patients as active stakeholders in their care promotes a patient-centered approach to healthcare, and may positively impact outcomes. Two tools for use in clinical practice were developed to aid patient-provider communication in oncology: Assessing Treatment Goals and Patient Education. This study aimed to evaluate the face and content validity of these tools. Methods: A non-interventional, cross-sectional, qualitative cognitive interview study was conducted in the US with patients with non-hodgkin’s lymphoma (n = 6), lung cancer (n = 7) and colon cancer (n = 7) and matched caregivers (n = 10). Interviews with oncologists (n = 5) and oncology nurses (n = 5) were also conducted. During the interviews, participants completed both tools as a ‘think-aloud’ process and were asked about the relevance and understanding of the instructions, questions, and response options, from the patient and healthcare provider perspective. Results: Ademographically and clinically diverse participant sample was recruited. Feedback from participants confirmed that the Assessing Treatment Goals tool questions were understood and considered relevant. Minor modifications were proposed including the addition of a question regarding the involvement of family and friends in healthcare decision-making. Similarly, the Patient Education tool topics were well understood and relevant. Minor modifications to simplify topic wording were proposed. Furthermore, the empirical data led to adding two topics: ‘body image’ and ‘beyond cancer care’. No topics were suggested for deletion from this tool. Patients and healthcare providers considered both tools to be valuable for communication. Conclusions: Feedback from participants supported the face and content validity of both tools with minor modifications. The next phase of research is to pilot the tools in clinical practice and assess for usability and feasibility. It is hoped that when used in clinical practice these tools will facilitate greater patient-provider communication and increased satisfaction with care.
The oncology prognosis and informed consent: Presentation of a new model to best inform patients.
Authors: Garmezy Benjamin , Blumenthal-Barby Jennifer 
Published: April 2017

146 Background: Receiving a malignant diagnosis is challenging and patients must be properly informed of their prognosis to make the best decisions for themselves and their families. The general population has a low degree of statistical literacy and therefore approximations should be considered favorable. However, given that half of patients desire quantitative data, physicians must provide this information within a context that is relevant and comprehensible. Single-point median survival data is less meaningful for patient decision-making. What is preferable is that physicians give experience-based estimations on how a patient might compare to the ‘average’. Including this information leads to more informed consent and best follows the ethical principle of autonomy. Methods: This is a novel framework for providing a prognosis that builds upon the multiples-of-the-mean model established in 2010 by Kiely, Tattersall, and Stockler. This framework was derived from original ethics research involving patient preferences, statistical comprehension, healthcare communication, and medical decision-making. Results: Graphical representation of Kiely’s model provides an intelligible view of quantitative data and allows for the physician to include an experience-based estimation. Steps: (1) Draw a Horizontal line, (2) Calculate from median survival data by using five multiples: 0.25 (Worst-Case, 10% of patients), 0.5 (Lower-Typical, 25%), 1 (Median, 50%), 2 (Upper-Typical, 75%), and 3 (Best-Case, 90%), (3) Label the chart using simple time points in months or years (4) Draw a circle over the region that best represents the patient’s expectation, (5) Provide the diagram alongside easy-to-understand language that clarifies the meaning of the numerical data with written likelihood of the occurrence, such as “almost no chance”, “not likely”, “even chances”, “likely”, and “fairly confident”. Conclusions: Kiely’s model has proven an accurate estimation in colorectal, castration-resistant prostate, non-small-cell lung, and metastatic breast cancer. A graphical representation should provide physicians an easy tool to strengthen informed consent and better aid their patients in decision-making.
Oncologist preferences in advanced soft tissue sarcoma: A discrete choice experiment.
Authors: Hess Lisa M. , Ivanova Jasmina I , Horton Viviana Garcia , Graham Sophia , Liu Olivia , Zhu Yajun , Lorenzo Maria , Nicol Steven J. 
Published: April 2017

147 Background: Soft-tissue sarcomas (STS), a rare heterogeneous group of cancers originating in the muscle, fat, blood vessels or other fibrous/connective tissues, account for 1% of all cancers diagnosed annually in the US. The National Comprehensive Cancer Center guidelines include a wide range of regimens that lack supporting randomized trial evidence, and there are few treatment pathways to guide treatment decision making. A discrete choice experiment (DCE) was conducted to quantify the relative value of overall survival (OS), progression-free survival (PFS), tumor response rate (RR), risk of hospitalization due to side effects, and convenience of therapy (days per month to administer treatment) among oncologists. Methods: An online DCE survey was administered to oncologists recruited from an online panel, who were licensed to practice in the US at the time of the survey and prescribed chemotherapy to patients with STS. Oncologists were asked to choose between pairs of hypothetical treatments characterized by a common set of attributes: OS (14, 20 or 26 months), PFS (3, 5 or 7 months), RR (12, 18, or 26%), risk of hospitalization due to side effects (12, 30 or 46%), and days/month to administer treatment (1, 2 or 4 days). A hierarchical Bayes model was used to analyze preferences, the relative importance of treatment attributes (from 0-100%), and trade-offs between attributes. Results: 160 eligible oncologists completed the survey: 74% male; 41% private practice; and 64% affiliated with an academic teaching hospital. OS had the highest relative importance (44.6%, standard deviation, SD, 16.0%), followed by the risk of hospitalization (18.4%, SD 8.3%). PFS, RR, and days to administer treatment had lower relative importance (16.5%, 10.6%, and 9.9%, respectively). For a 1-month increase in OS, oncologists were willing to trade off 8.9 percentage points increase in hospitalization risk, a 2.1 month reduction in PFS, 13.1 percentage points decrease in RR, and an additional 4.6 days/month to administer treatment. Conclusions: Oncologists in the US value maximizing the life of patients with STS while avoiding hospitalizations. Patient preference interviews are ongoing with patients with STS, which will be presented at the meeting.
Carcinoid Syndrome Impact Survey: Evaluation of the burden of illness and the gap between patient and oncologist perceptions.
Authors: Goldstein Grace , Evans Kathleen , Shah Arpan , Lapuerta Pablo 
Published: April 2017

151 Background: Patients with advanced neuroendocrine tumors (NETs) may develop carcinoid syndrome, a rare condition characterized by debilitating symptoms including diarrhea, flushing and valvular heart damage that can greatly affect patient social and physical functioning. Limited information is available on the physician perceptions of carcinoid syndrome and areas that differ from patients. The Carcinoid Syndrome Impact Survey probed potential gaps in oncologist, patient and caregiver perception and the overall burden of the disease. Methods: The survey designed in collaboration with patient advocacy groups was conducted (June-October 2016) among 538 patients with carcinoid syndrome, 94 caregivers, and 151 oncologists. The online, anonymous survey consisted of demographic and disease-related questions including symptom frequency, and impact to daily living of carcinoid syndrome. Each group of respondents was given mirrored questions whenever possible to allow for comparison across groups. Questions were based primarily on a 4-level Likert scale. Results: Differences in perception of symptom frequency, syndrome severity and impact of carcinoid syndrome on daily living were observed between patients, caregivers, and oncologists. Patients and caregivers were more likely to report symptom frequency as > 21 days a month (39% caregivers vs 38% patients vs 4% oncologists). Most oncologists cited symptom frequency as 1-7 days a month (50% of oncologists). Patients were more likely to report carcinoid syndrome affecting them ‘a great deal’ (62% patients vs 23% oncologists). Caregivers were most likely to report the highest category of severity compared to patients and physicians (39% caregivers vs, 25% patients vs 17% oncologists). Conclusions: Oncologists may not be fully aware of the impact of carcinoid syndrome on patient daily living. Furthermore, caregivers may perceive aspects of disease burden to which patients have habituated and may not report as frequently. Tools to encourage more explicit dialogue between patients with carcinoid syndrome and oncologists are needed to narrow the information gap and subsequently improve treatment outcomes.
The role of annual personal health visits (APHV) on patients' with cancer knowledge and perceptions of the harms of continued smoking.
Authors: Farzanfar Delaram , Lu Lin , Su Jie , Alton Devon , Mohan Rahul , Liu Sophia , Krys Olivia , Yoannidis Tom , Brown M Catherine , Vennettilli Ashlee , Hope Andrew J. , Howell Doris , Jones Jennifer M. , Selby Peter , Xu Wei , Goldstein David Paul , Giuliani Meredith Elana , Liu Geoffrey , Eng Lawson 
Published: April 2017

152 Background: With improvements in cancer detection and therapies, important secondary prevention measures in survivorship include smoking cessation. Primary care providers have an opportunity to discuss these measures with cancer survivors at APHV. We evaluated whether having a recent APHV is associated with cancer patients’ awareness and perceptions of the harms of continued smoking. Methods: Cancer survivors were surveyed from April 2014 to May 2016 with respect to their smoking history, knowledge and perceptions of the harms of continued smoking along with the date of their most recent APHV (term changed from annual health physical examination in 2013). Multivariable logistic regression analyses assessed the association of having an APHV with knowledge and perceptions of the harms of continued smoking. Results: Of 985 cancer patients, 23% smoked at diagnosis; 34% quit > 1 year prior to diagnosis; 55% had tobacco-related cancers; 77% received curative therapy. From a knowledge viewpoint, over 52% reported being unaware that smoking negatively impacts cancer outcomes; despite this, most perceived smoking to negatively influence quality of life (75%), survival (76%), and fatigue (73%). Within the last year, 48% had an APHV, while 84% had an APHV at any time in the past; 18 (2%) reported not having a family doctor. Patients who had an APHV in the last year were more likely to be aware that continued smoking can increase risk of death (adjusted odds ratio (aOR)=1.49, 95% CI [1.13-1.96], P=0.004), and more likely to perceive smoking to negatively impact quality of life (aOR=1.37 [0.94-1.99], P=0.10), survival (aOR=1.60 [0.95-2.71], P=0.08), and fatigue (aOR=1.63 [1.11-2.39], P=0.01). Those ever having an APHV were more likely aware that smoking can increase risk of death (aOR=1.61 [1.07-2.43], P=0.02) and second primaries (aOR=1.53 [1.02-2.33], P=0.04). Conclusions: Having a recent APHV was associated with improved awareness and perceptions of the harms of continued smoking, but it is unclear whether this is related to provider counseling or a healthy bias effect. APHV may be an appropriate time for primary care providers to treat tobacco addiction in their cancer survivors.
Improving shared decision making in chronic lymphocytic leukemia through multidisciplinary education.
Authors: Williams Courtney , Halilova Karina I. , Borate Uma , Jackson Bradford E. , Van Laar Emily Sherene , Pisu Maria , Butler Thomas Wayne , Davis Randall S. , Mehta Amitkumar N. , Knight Sara J. , Safford Monika M. , Rocque Gabrielle Betty 
Published: April 2017

154 Background: New treatments for chronic lymphocytic leukemia (CLL) with excellent response rates and varying toxicity profiles have emerged in recent years, creating an opportunity for a patient’s personal preferences to contribute to treatment decisions. Methods: We conducted a prospective, quasi-experimental pre- and post-evaluation of a multi-level educational program and its impact on knowledge of CLL as well as on shared decision-making. We educated patients, patient navigators, and providers (nurses and physicians) using a combination of print, video, in-person lectures, and online case-based education tailored to each learner group. Patients were evaluated for change in patient activation, distress levels, desired role in decision-making, perception of decision-making, satisfaction with oncologist explanation of treatment choice, and knowledge of CLL. Patient navigators and providers were evaluated for change in CLL knowledge and perception of shared decision-making. Results: Forty-one patients and 87 providers participated in the educational program. We observed trends toward improved patient activation with 68% before education vs. 76% after education reporting a high (score of 3 or 4) Patient Activation Measure (PAM) . The percentage of patients desiring and perceiving shared decision-making trended upward from 47% to 67% and 35% to 49%, respectively. There was a trend toward an increase in the percentage of patients understanding that CLL is incurable (80% to 90%) and reporting awareness of signs of progression (64% to 76%). Patients satisfaction with their oncologist’s explanation of therapy increased significantly from 83% to 95% (p = 0.03). Conclusions: This modestly sized project demonstrated trends toward improvements in patient engagement, prognostic awareness, knowledge of signs of progression, and shared decision-making; these promising findings should be tested in larger samples. However, there remains an opportunity for further improvement in shared decision-making.
Patient engagement on claims-registry reports of cost and quality.
Authors: Kreizenbeck Karma L. , Fedorenko Catherine R. , Walker Julia Rose , Greenwood-Hickman Mikael Anne , Panattoni Laura , Barger Sarah , Eaton Keith D. , Freeman-Daily Janet , Mapes Diane , Pate Margaret Leigh , Preusse Courtney J. , Lyman Gary H. , Ramsey Scott David 
Published: April 2017

159 Background: Moving cancer care towards a value framework requires patients, providers, and payers to weigh cost, quality, and outcomes in decision-making. Many efforts are underway to help providers and payers make value decisions, but little has been developed for patients. Our regional value in cancer care effort used a claims-registry database to develop quality and cost reports aiming to provide actionable data to all stakeholders. Methods: Reports were generated using cancer registry records for Western WA from 2007-2015 linked with claims from two regional commercial insurers. Patients were presented quality reports on regionally prioritized metrics and the 2012 ASCO Choosing Wisely guidelines on breast cancer surveillance and EOL care. Patients also reviewed cost reports for episodes of care (diagnosis, treatment, end-of-life (EOL)) and out-of-pocket (OOP) cost estimates. Feedback stemmed from 1) stakeholder meetings over a 2-year period, 2) working groups of patients, payers and providers, and 3) an annual regional meeting on value in cancer care. Results: In total, 13 patients provided feedback at one or more outreach event. See table. Conclusions: Reports from a claims-registry database may not support the information needs of patients for care decision-making or representing “value”. Patients desired understanding more about patients “like them” for decision-making. [Table: see text]
Lung cancer screening on YouTube: Difficulty of finding balanced information.
Authors: Alban Juan , Alban Luis Felipe , Khanal Amit , Feldman Lawrence Eric 
Published: April 2017

162 Background: Lung cancer (LC) is the leading cause of cancer mortality in the US, the ACS estimates upwards of 220,000 new cases will be diagnosed this year. Recently, the Center for Medicare/Medicaid Services (CMS) agreed to cover LC screening with low-dose CT for patients however, CMS requires prior documentation of a shared-decision making (SDM) visit between the patient and the referring clinician to inform them about risks of screening. LC Screening programs have begun to use YouTube for patient recruitment, education and marketing of screening. The objective of this study is to shed light on the role of YouTube in lung cancer screening in terms of guidelines, screening options, target population, steps after screening, and risks and benefits of screening. Methods: We searched YouTube.com to identify videos dealing with lung screening using the keywords: lung cancer screening. Videos without sound, uploaded before 2009, longer than 20 minutes, duplicates and videos in a language other than English were excluded. This method yielded 124 videos that fit criteria. Videos were coded for inclusion of LC screening process, risks and benefits of screening, screening guidelines, risk factors for LC, and treatment options after LC diagnosis. Results: 124 videos had a cumulative 262753 views. 38.7% of the videos included no mention of CMS guidelines. Only 30% included any mention of the risks associated with screening; 14% mentioned false positives, 12% radiation; 4% anxiety associated with screening though 92% of all videos sampled were intended for patients. 91% of videos explained the benefits associated with cancer screening however, only 26% explained the actual process of screening. The majority of videos were created by medical institutions (66%). No videos sampled included false information. Conclusions: While most videos highlighted the benefits of LC screening, YouTube can’t serve as a replacement for SDM visits due to inadequate discussion of risks of screening. A substantially low number of videos (30%) discussed the risks of lung cancer screening. Given the high rate of false positives, radiation and anxiety associated with screening, patients need to be made aware of these risks so they can make an informed decision.