bluuebunny/crossref_metadata_2025_split huggingface dataset:
A dynamic managed care platform for palliative care.
Authors: Fruth Briant , Fitch Tom R. , Shannon Robert P. , Uitti Ryan , Carey Elise , Ingram Cory , Tan Angelina D. , Alexander Alex , Warsame Rahma M. , Melanson-Arnold Margot , Sloan Jeff A. 
Published: November 2017

32 Background: The link between patient concerns and clinical systems delivery is often suboptimal. We developed a case management system for palliative care which transforms the patient’s greatest concerns into actionable clinical pathways. Methods: The system collects patients’ single greatest and second greatest concern plus Quality of Life (QOL) data (pain, fatigue and overall QOL single-items scored 0-10 with 10 representing worst pain/fatigue, or best QOL) and produces a report to guide the physician and patient. The system presents ten “buttons” in a xylophone-like grid: Personal Relationships, Monitoring Health, Emotional Health, Money, Health Behaviors, Medication Troubles, Care Access, Work Worries, Physical Health and Care Planning. We performed a quality improvement study at Mayo Clinic sites. Results: 409 patients participated in at least one survey from 11/04/2015 to 9/22/2016 (620 total surveys). The most common Main Concern was Physical Health 265/620 (43%) followed by Monitoring Health (17%), Medication (8%), and Emotional Health, Money, and Health Behaviors (7% each), Personal Relationships (6%). Future Care Planning, Work, and Care Access/Coordination were rarely chosen ( < 5%). The most common Second greatest concern was Health Behaviors 73/409 (18%) followed by Physical Health (17%). 93/122 (67%) patients changed their greatest concern from baseline to subsequent visits. The mean QOL, fatigue and pain at baseline were 4.8, 6.0 and 4.8 respectively, indicating substantial clinically significant deficits. Post baseline mean scores improved by a maximum of 0.8, 1.1, and 0.9 points respectively, representing clinically meaningful effects. On average it took 8 minutes for patients to use the system. Conclusions: The system was quick and easy to utilize. The personal impact concerns (physical/emotional health, medications) were most often cited as the greatest concern, while care issues were de-emphasized by patients. Patients and physicians praised the system for making visits more efficient and raising issues that otherwise might not have been addressed. This system has the potential to improve patient well-being and clinical outcomes, as well as to reduce burden on clinicians and optimize case management activities.
Disagreements in surgical decision making for advanced cancer patients secondary to deficiencies in palliative care education.
Authors: Bateni Sarah , Canter Robert J. , Meyers Frederick J. , Galante Joseph M , Bold Richard J. 
Published: November 2017

34 Background: Surgical decision making in advanced cancer patients requires careful thought and deliberation balancing the high risks with the potential palliative benefits. We sought to compare palliative care education and decision-making for palliative surgery among physicians who commonly treat advanced cancer patients. Methods: Practicing surgeons, medical oncologists, palliative care physicians and critical care intensivists from a large urban city and its surrounding areas were surveyed with a 32-item questionnaire consisting of a palliative care education survey and 4 clinical vignettes depicting patients with advanced cancer and symptomatic surgical conditions. Results: Of the 299 physicians surveyed, 102 responded with a response rate of 34.1%. Respondents reflected the demographics of the total cohort. Physicians reported minimal hours of palliative care education during residency (median 0, IQR 0-8), fellowship (median 0, IQR 0-20), and continuing medical education (CME, median 8, IQR 0-20). Surgeons reported the fewest hours of palliative care education during residency, fellowship, and CME combined (median 10, IQR 2-15) compared to medical oncologists (median 30, IQR 20-80) and intensivists (median 50, IQR 30-100), p < 0.05. 19.6% of surgeons reported receiving no palliative care education compared to none of the medical oncologists and 7.7% of intensivists. Analysis of physician treatment recommendations for the 4 clinical vignettes showed disagreement among physicians regardless of specialty. Absence of palliative care training was associated with recommending major surgical intervention more frequently compared to physicians with ≥40 hours of palliative care training (0.7 ± 0.7 vs. 1.6 ± 0.8, p = 0.01). Conclusions: Deficiencies in palliative care education persist and adversely impact quality of care. Recent national society recommendations for palliative care services are well founded given these deficiencies. Additionally, our findings highlight a sustained failure of the current postgraduate medical education system and the need for greater efforts system-wide in palliative care education across medical and surgical specialties.
Listening behind closed doors: Shared decision making between hospice nurses and cancer patients and caregivers.
Authors: Oliver Debra Parker , Wallace Audrey S. , Washington Karla , Demiris George , Clayton Margaret F. , Reblin Maija , Ellington Lee 
Published: November 2017

41 Background: The philosophy behind hospice care recognizes the patient and family as a unit of care and embraces their role in decision making. Research has primarily focused on physician and patient decision making yet, most decisions made at the end of life are between nurses, patients, and family members. The majority of hospice care is delivered in patient homes and little is known about these interactions. The goal of this study was to evaluate the shared decisions within the home environment between hospice nurses and patients/family. Methods: A secondary qualitative analysis of audio recordings of visits by 65 home hospice nurses to cancer patients in 11 hospice programs was conducted. Recordings were transcribed and coded by two team members using a pre-established nine element model of shared decision making. Elements of the model included: Defining a problem and options, discussing risks and benefits, focusing on how the options relate to patient values, the patient’s or family member’s ability to follow through, the provider’s recommendation, clarification of the understanding of options, and a follow-up plan. Results: Hospice nurses worked with families on an average of four problems in a mean visit time of 30 minutes. The hospice nurses used all the 9 recommended elements of shared decision making during home visits with patients and families however, not all elements were used in every visit. The most commonly used element was defining a problem, and the least used element was the assessment of patient and family understanding of options. Conclusions: Decision making for those enrolled in hospice occurs between nurses and patients/families. While ultimately responsible for the decisions that are made, physicians have limited interaction with the patient and family in their natural setting. Hospice nurses on the other hand, experience the impact of decisions in the environment in which they are implemented. Hospice nurses are the physician’s eyes and ears behind the closed doors of the home and can be valuable partners as they work with families on critical decisions several times each week.
Does prognostic uncertainty affect discussions of prognosis? Lessons from a survey of hematologic oncologists.
Authors: Odejide Oreofe Olukemi , Cronin Angel M. , Earle Craig , Mack Jennifer W. , Tulsky James A. , Abel Gregory A. 
Published: November 2017

45 Background: Although recent advances in cancer therapy have improved survival for patients with solid tumors, they have also increased the complexity of prognostication (Temel, JCO 2016). Prognostic uncertainty is particularly prevalent in hematologic oncology (LeBlanc, JOP 2014) and potentially a barrier to timely end-of-life (EOL) communication (Odejide, JCO 2016). Methods: In 2015, we mailed a 30-item survey to a national sample of hematologic oncologists randomly selected from the American Society of Hematology directory. The survey was developed through focus groups (n = 20) and cognitive debriefing (n = 5). We aimed to characterize respondents’ reports of prognostic discussions, as well as their timeliness and content. Results: We received 349 surveys from 48 states (response rate: 57%). Median time in practice was 25 years and 57% practiced in community settings. Overall, 60% reported discussing prognosis with “most” ( > 95%) of their patients. Those with < 15 years clinical experience (AOR = 0.54, 95% CI 0.31, 0.94) and those considering prognostic uncertainty to be a barrier to EOL care (AOR = 0.57, 95% CI 0.35, 0.92) were less likely to have prognostic discussions with “most” of their patients. When discussing prognosis, almost all (98%) reported typically having an initial discussion at diagnosis or during a period of stability; however, 18% reported either never readdressing prognosis or doing so only when death is clearly imminent. In terms of preferred terminology, 57% reported routinely having “general discussions of potentially curable disease,” while 43% preferred providing specific data such as percent chance of survival or median survival. Conclusions: The majority of hematologic oncologists in this large cohort reported discussing prognosis with their patients, but doing so qualitatively, focusing on whether cure is possible. About one-fifth reported not readdressing prognosis in a timely manner. These suggest that the prognostic uncertainty common with blood cancers fosters missed opportunities to convey what is known about prognosis. Given the growing difficulty in solid tumor prognostication, these data may foreshadow coming communication gaps for oncology as a whole.
Oncologists’ experiences with goals of care conversations.
Authors: Smith Cardinale B. , Solomon Rachel , Lin Jenny J. , Feder Shelli , Bickell Nina A. , Schulman-Green Dena 
Published: November 2017

50 Background: ASCO guidelines suggest that patients with advanced cancer should have goals of care (GoC) conversations with their oncologists, yet only 37% report having them, often at the end of life. Describing oncologists’ experiences with GoC conversations is a crucial first step in tailoring communication training interventions. Methods: We conducted semi-structured interviews with oncologists at academic, community, municipal, and rural hospitals (n = 4) in New York and Connecticut. We analyzed data using interpretive description. Three coders developed a code key, independently and then jointly coded transcripts, and identified themes. Results: Oncologists (n = 21) were 67% male, averaged 46 years old (range 34-68) and 20 years (range 8-42) in practice, and 59% reported training in GoC. Sixty-nine percent were White, 23% Asian, and 8% Hispanic. Within oncologist narratives we identified generalizable facilitators and detractors to their practice of GoC conversations. Facilitator experiences included formal training in GoC discussions, a practice culture that supported GoC conversations (i.e. presence of specialty level palliative care), interactions with patients who they perceived to have realistic expectations, and good strategies for self-care and coping. One oncologist stated, “I can't cry or die with every patient because then I won't make it through the day.” Detractors included patient failure to understand cancer severity or treatment goals, younger patient age, and being the oncologist sought for second opinion. Oncologists described active patient participation, respect for patient beliefs and values, and achieving agreement on a care plan as elements of successful GoC discussions. An oncologist summarized, “People who are in the healthcare field think that goals of care are an immutable statement, but it’s not.... the way you can make an effective goals of care discussion, is to relate to their reality.” Conclusions: Multiple considerations impact oncologists’ experiences with GoC conversations. Tailoring communication interventions to address these concerns may increase rates of earlier and ongoing GoC conversations. Clinical trial information: NCT02374255.
Oncology providers, patients, and caregivers reflect: Applying "big data" for better supportive outcomes.
Authors: Haverfield Marie C. , Singer Adam , Lorenz Karl 
Published: November 2017

59 Background: The development of “big data” methods offers an opportunity to more precisely predict patient outcomes. We explored physicians, patients, and caregivers’ perspectives about the use of predictive models in oncology practice. Methods: We conducted 12 patient, 12 provider, and 12 caregiver interviews (N = 36) from Stanford University outpatient oncology clinics. We queried participants about patient and family-centered applications of predictive models for prognosis, cost, and novel patient and family-centered outcomes. Two trained coders iteratively examined transcripts for consistent topics and used the constant comparative methods to establish themes and sub-themes. Results: Several overlapping themes emerged: 1) Outcomes of Interest, [provider] “Predictive information about side effects or adverse effects of treatment would be helpful”: 2) Barriers to Using Predictions, [patient] “If it seems too sort of set in stone, without…you know, everything has grey areas”; 3) Benefits to Using Predictions, [provider] “Some people…their cancer may be cured, but they live with these really horrible chronic illnesses and some people would say, ‘I would have rather have just died from my disease than be in this shape’; and 4) Communication Strategy, [provider] “I’m not even sure if I would bring up the models…I would kind of fall back on what I normally discuss with patients”. A theme specific to the provider group was 5) Accuracy of Model Information, [provider] “It’s hard to know whether to use in the clinical setting just the results of the model or whether you would really want to go down to the root level and actually access the raw data”. A theme specific to the patient and caregiver groups was 6) Privacy, [caregiver] “I would want to be able to have the patient authorize that”. Conclusions: There is consistency between provider strategies to communicate prognostic information and patients’ perceptions of how they would like prognostic information to be communicated to them. While providers are concerned with accuracy of predictive models, patients and caregivers are more concerned with privacy.
Improving advanced care planning in patients with metastatic cancer.
Authors: Mahmood Tallat 
Published: November 2017

6 Background: Our group as a member of the Michigan Oncology quality Consortium (MOQC) participates in ongoing quality metric evaluations every spring and fall. Through this exercise we found we were performing low on the advance care planning (ACP) metrics. To address this we first realized we did not had a consistent place in the HER to document this. We created an ACP note and then worked on identifying a patient advocate and starting the ACP process. Methods: We first assessed our standard practice prior to joining MOQC and found we were entirely dependent upon the physician to initiate the discussion and often this was being done by the physician only at the time of disease progression. We then garnered the healthcare team to help with the process. The medical assistants (MA) would give the patient the DPOA/ACP forms with a brief explanation of the forms. This would be reiterated by the provider. On subsequent visits, the MA would ask the patient about the status of the form and if it had been filled out, and if not the nurse was flagged to call the patients . The physician assistant starting discussing the DPOA/ACP form in the chemo teach sessions. We then audited the charts of 100 patients’ after implementing the changes and compared them to our historic data from MOQC. Results: By implementing these changes we were able to increase our hospice enrollment from 47% to 66%; and our documented discussion of ACP went from 27% to 83%. However 25% of our patients still died in the hospital and we were consulted on only 50% of the hospitalized patients. Conclusions: Although we were able to improve referrals to hospice and increase discussion of ACP, there is still much work to be done. Despite the improvements we saw in the documentation of end of life discussions there was still a significant number of patietns who were admitted to the hospital at the end of life and who died in the hospital. One of the reasons could be the lack of communication with admitting providers as we were consulted in only 50% of those patients.
How do late-stage cancer patients join an early phase clinical trial? A qualitative investigation of the process.
Authors: Garrett Sarah Bracey , Koenig Christopher J , Dohan Daniel Paul 
Published: November 2017

60 Background: Late-stage cancer patients (LSCPs) face complex choices as they exhaust standard treatment options, including whether to seek enrollment in an early phase (EP) clinical trial and how they may engage palliative care. Existing research describes patient-level decisional motivations, but less is known about the process by which patients arrive at decisions and the institutional barriers or facilitators that shape it. We investigate this process and the key barriers and facilitators for initiating an EP trial. Methods: We collected longitudinal, ethnographic data on 96 LSCPs from breast, genitourinary, gastrointestinal, lung, gynecology, and melanoma clinics at two large academic medical centers. We used constant comparative analysis to inductively identify factors that shaped patients’ paths towards or away from EP trial initiation. Results: Four key factors shaped patients’ pathways and help explain why most patients did not join a trial. These arose during two distinct periods. The first, “Setting the Stage,” concerned achieving both (a) patient and (b) physician interest in and support for the patient’s involvement in an EP trial. These achievements depended on the patient’s knowledge and opinions of experimental research, the physician’s awareness of relevant EP trials, and whether the physician considered the patient a good EP candidate, among other influences. The second period, “Securing an Experimental Seat,” concerned aligning (c) the availability of a specific EP trial with (d) the patient meeting the trial’s eligibility requirements. Disease progression, type and timing of past treatments, and dynamic trial enrollment windows all complicated this alignment. Despite the complexity of Securing a Seat, our data suggest that Setting the Stage was the more consequential period in terms of when patients exited the EP trial pathway. Conclusions: Patients’ priorities and decision-making are only one part of a multi-level process. LSCPs’ paths onto an EP trial depend not only on their making a particular decision, but also on relational, clinical and system-level conditions. This suggests that boosting EP trials participation requires interventions on multiple levels.
Patterns of radiation delivery in the last 6 months of life.
Authors: Wallace Audrey S. , Williams Courtney , Kvale Elizabeth Ann , Pisu Maria , Partridge Edward E. , Fiveash John B. , Rocque Gabrielle Betty 
Published: November 2017

66 Background: The purpose of this analysis is to report patterns of radiation delivery at the end of life among older cancer patients. Methods: This was a retrospective cohort study of deceased Medicare patients age ≥65 with Stage IV cancer treated from 2012-2014 at 12 cancer community networks affiliated with an academic center in the Southeast, with available follow-up through 2015. Patients without Medicare coverage through 2015 were excluded. The outcome of interest was receipt of radiation in the last 6 months of life. Bivariate analyses for age group (65-69, 70-79, 80+), gender, Charlson comorbidity index (0, 1, 2+), cancer type (lung, GI, GU, H&N), and center volume (high = > 4000 cases/year) associated with receipt of radiation were performed. Results: 3688 patients met inclusion criteria; 700 (19%) received radiation in the last 6 months of life. In the radiation group (RT) & no radiation group (no-RT), median age at cancer diagnosis was 73 & 75 years, 41% & 45% were female, and 50% & 54% had Charlson comorbidity index of 2+. For the RT and no-RT groups, the cancer distribution was lung (39% & 33%), GI (15% & 26%), GU (7% & 9%), and H&N (6% & 5%); median time from diagnosis to death for RT and no RT was 449 & 400 days. Median time from last fraction of radiation to death was 84 days for the entire cohort; 27% of radiation was delivered in the last 30 days of life. On bivariate analysis, patients treated with radiation were more likely to be younger, Caucasian, have lung cancer, lower Charlson comorbidity score, and be treated at smaller volume centers(all p < 0.05). Conclusions: Among older terminally ill cancer patients who received radiation, > 25% received radiation in the last 30 days of life, which may reflect the challenges of prognostication in this cohort. Older patients were less likely to receive radiation, which may be indicative of barriers associated with receipt of treatment with increasing age.
Use of hospice services among Medicare beneficiaries with acute and chronic leukemias.
Authors: LeBlanc Thomas William , Olszewski Adam J. 
Published: November 2017

68 Background: Studies show lower rates of hospice use among patients (pts) with hematologic malignancies. Our objective was to describe trends in hospice use and in quality measures for end-of-life (EOL) care among Medicare beneficiaries with leukemias. Methods: From the Surveillance, Epidemiology, and End Results (SEER)-Medicare linked database, we selected pts with acute (myeloid or lymphoblastic) or chronic (lymphocytic, myeloid, or myelomonocytic) leukemias diagnosed in 1996-2011 who died in 2001-2011. We identified hospice enrollment at death, duration of hospice enrollment, inpatient deaths, intensive care unit (ICU) admissions within 30 days of death, and chemotherapy use in the last 14 days of life. We summarized linearized trends by year of death using log-binomial regression, reporting average annual percent change (APC). Results: Among 38,038 leukemia pts (41% acute, median age 78 years) 81% died, after median 2.8 months from diagnosis (95%CI, 2.7-2.9) for acute and 49.1 months (95%CI, 47.9-50.1) for chronic leukemias. Among pts who died in 2001-2011 ( N= 23,941), 42% were enrolled in hospice at the time of death. This proportion significantly increased between 2001 and 2011, from 33% to 48% (APC +4.1%, P< .001), both for acute and chronic leukemias ( Pinteraction= .25). Median time on hospice was 8 days, and the proportion of pts with < 3 days on hospice increased from 20% to 24% between 2001 and 2001 (APC +1.2%, P= .05). Inpatient deaths significantly decreased from 54% to 39%, respectively (APC -3.2%, P< .001), but ICU use at EOL increased from 34% to 41% (APC +2.4%, P< .001). Chemotherapy use at EOL was more frequent in acute (17%) than chronic (6%) leukemia, and decreased for both (overall from 15% to 10%, APC -3.2%, P< .001). Conclusions: The use of hospice services among older pts with leukemia has increased, suggesting its wider acceptance over time. However, the increasing proportion of brief, terminal hospice admissions, and increasing rate of ICU use at EOL reflect persistent barriers to early enrollment in this population. Some measures of aggressiveness of care (inpatient deaths, chemotherapy at EOL) are lower in the community than previously reported from academic centers (El-Jawahri, Cancer 2015).