bluuebunny/crossref_metadata_2025_split huggingface dataset:
Communication of prognostic information between oncologists and patients with advanced lung cancer.
Authors: Babu Dilip Sankar , Gerbino Nicholas , Fiscella Kevin , Shields Cleveland , Griggs Jennifer J. , Epstein Ronald M. , Tejani Mohamedtaki Abdulaziz 
Published: November 2018

29 Background: A critical domain of patient-provider communication is helping cancer patients understand their prognosis, as well as the efficacy of treatment options. In this qualitative study, we explored the ways oncology providers approached prognostic discussions during initial office visits with patients with metastatic lung cancer. Methods: Transcripts of initial visits between unannounced standardized patients portraying metastatic non-small cell lung cancer and their oncologists were recorded at multiple practice sites in community and academic settings, as part of a large NIH-funded study. Thematic analysis was conducted on a subset of these recorded visits from one study site. In this secondary analysis, three coders (one medical oncologist, one palliative care physician and one research assistant) reviewed transcripts independently to extract quotes related to prognosis, meeting regularly to review selected quotes and to decide on codes. This process repeated until saturation of themes was achieved (n = 15). Results: Discussions of prognosis were found in all 15 transcripts reviewed. Three main themes were identified: (1) Vagueness, in which best-case/worst-case scenarios were presented without an estimate of life expectancy; (2) Statistical Reliance, in which complex statistical data were presented to the patient; and (3) Emotional Support, in which the discussion was infused with emotional reassurance which was contextually appropriate. A fourth identified theme was (4) Minimizing of Supportive Care, as discussions of management options did not always elaborate on best supportive care. Conclusions: Our qualitative analysis of initial office visits among simulated patients with metastatic lung cancer revealed that providers often frame prognostic information in vague terms without a realistic estimate of life expectancy, sometimes give patients complex statistical data, and tend to accompany their discussions with emotional reassurance. Best supportive care is not always fully explained when management options are reviewed. More work is needed to determine optimal ways to convey prognostic and management information during clinic visits for patients with advanced cancer.
Early discussion of patients’ values by oncology nurses.
Authors: Epstein Andrew S. , Chow Kimberly , Anderson Kelley , Okpako Molly , Bernal Camila , Romano Danielle R. , Desai Anjali Varma , Klimek Virginia M. , Rawlins-Duell Robin , Goldberg Jessica , Kramer Dana , Nelson Judith Eve 
Published: November 2018

3 Background: Optimal advance care planning allows patients to articulate their values as an affirmation of personhood and a touchstone for medical decision-making. Ideally, it occurs when patients are well enough to express themselves thoughtfully, with opportunities for iteration as the clinical situation unfolds. We piloted a novel program of systematic, oncology nurse-led values discussions with patients soon after diagnosis, testing feasibility, and acceptability in high-volume clinics in a dedicated cancer center. Methods: Within an institutional initiative integrating primary and specialist palliative care from diagnosis for all cancer patients regardless of stage or prognosis, specialists trained oncology nurses (90 minutes) to use specific questions ( re living well, hopes, fears, sources of strength, abilities essential for acceptable quality of life) and an empathic communication framework to discuss health-related values with newly-diagnosed patients over two consecutive clinic visits. Nurses summarized discussions on a template for patient verification, oncologist review, and EMR documentation. Documentation was re-reviewed with the patient quarterly (sooner on patient or clinician request). Feasibility and acceptability were evaluated in three clinics for patients with hematologic or gastrointestinal (GI) cancers. Results: Oncology nurses conducted a total of 83 discussions (part 1=38, part 2=29, template review=16) with 15 and 23 newly-diagnosed hematologic and GI cancer patients, respectively. No patient declined participation. Discussions averaged 8 minutes; summaries were reviewed in 4 minutes, and all were verified by patients. Clinic workflow and volume (about 20 patients/clinic day) were maintained. Of 12 patients, all reported feeling comfortable with the process, 92% considered it helpful, 92% would recommend it to others. In structured interviews, patients, families, and clinicians strongly endorsed this process. Conclusions: Early, nurse-led discussions of patient values are feasible and acceptable in high-volume outpatient oncology clinics. Next steps include optimization of EMR accessibility, scalability, and evaluation of impact on other patient-focused and utilization outcomes.
Shared decision-making preferences and pain characterization in patients with cancer.
Authors: Brant Jeannine M. , Stricker Carrie Tompkins , Petok Alison , Sih-Meynier Regina , Wujcik Debra 
Published: November 2018

30 Background: Cancer pain prevalence is high (52%-77%) with breakthrough pain flares and end-of-dose failure adding to patient suffering and increased health care utilization. Shared decision-making (SDM), incorporating patient-stated preferences, goals, and concerns, can foster comprehensive pain assessment (CPA) and improve pain outcomes. Methods: This study will evaluate SDM and CPA in patients with cancer to manage chronic and breakthrough pain. Eligible patients have pain or are taking opioids to manage chronic cancer pain. Patients complete a tablet-based survey at enrollment to record baseline pain and activity levels, pain flare severity and length, end-of-dose pain, and SDM preferences. Results are presented on an electronic dashboard and the provider and patient collaboratively establish a pain care plan. The effectiveness of SDM on pain outcomes will be measured with the Pain Care Quality Survey. Results: Pain characterization is described for the first 43 patients enrolled, of which 42% (n=18) desire to share decision-making with the provider, while 35% (n=15) prefer to make the final decision after considering provider input. Patients are 57% (n=26) female with a mean age of 56 (range 20-93); baseline mean pain scores were 5.4, and overall distress scores were 5.43, (scale 0-10); 91% had a pain flare in the last seven days with mean severity of 5.53; 72% of flares lasted longer than 30 minutes. All patients had end-of-dose pain. Less than half (42%) have restricted activity and 23% manage self-care but cannot work. Participants reported incident pain associated with certain activity (63%) as well as insidious pain not associated with activity (65%). Enrolled patients selected 143 pain descriptors: burning (16), achy (24), sharp and stabbing (21), pins and needles (15), cramping (14) radiating (14), intermittent (19), and continuous (20). Conclusions: The majority (77%) of patients desire SDM. Although most patients were already taking opioids at presentation, they had moderate pain and distress, frequent flares and end of dose pain, and limitations on activity level due to the pain. Baseline pain characterization with a drill down CPA offers opportunity to use SDM to develop effective pain care plans and measure outcomes. Clinical trial information: NCT03304145.
Impact of a patient and family meeting program for patients with metastatic genitourinary cancer receiving treatment in the ambulatory care setting.
Authors: Ochoa Michele Stayer , Mooney Stefanie , Bergerot Cristiane Decat , Burns Kathleen , Zachariah Finly , Sidhu Rupinder Kaur , Prudhomme-Hunter Jill , Garcia Nellie , Buga Sorin , Dale William , Loscalzo Matthew J. , Pal Sumanta K. 
Published: November 2018

31 Background: Palliative care in the ICU is recognized as a vital aspect of care delivery but less evidence exists regarding utilization in ambulatory care. Family meetings are considered a relevant strategy to discuss concerns around patients’ illness and treatment. This pilot study sought to describe preliminary results of the Patient and Family Meeting Program (FMP) implemented in October, 2017 in a genitourinary oncologic clinic. Methods: FMP is offered for high-risk patients with ≤ two year prognosis. Program includes: (1) patient identification, (2) orientation, (3) family meeting, and (4) post-meeting follow-up. After identification, social worker orients the patient/family, addresses advance directives, and assesses values regarding care. During the meeting, social worker introduces and elicits understanding of medical situation, physician provides medical information and recommendations, and social worker assists reconciling medical recommendations with patient values. During follow-up, educational materials are provided, referrals are made as indicated, and follow-up meetings are held by request. Results: 51 patients were identified. Most of them were male (69%) with a median age of 68 years, and diagnosed with renal cell carcinoma (47%), prostate cancer (27%), or urothelial cancer (26%). 48 orientations were conducted, and 18 family meetings were held. Hospice was recommended to 16 patients, and 69% were admitted. 6 cases were referred to supportive medicine. Oncologists spent on average 21 minutes with each family. In the inpatient setting, 3 family meetings were requested; all patients were referred to hospice, and 2 were enrolled. Conclusions: Findings indicate the feasibility/benefit of FMP; a high prevalence of patients were referred and enrolled in hospice. Meetings require little extra time for the physician. Also, this program favored better integration between the health care team and patient/family. Results provide support for expanding this program to other specialties. Extending the value of family meetings in ambulatory care is a unique opportunity to enhance essential psychosocial support to oncology patients with greatest need.
Communicating Oncologic Prognosis with Empathy (COPE).
Authors: Phillips Farya , Goodgame Boone W , Jones Barbara L 
Published: November 2018

38 Background: Clear communication between patients and providers is imperative to maximize patient outcomes, particularly for patients with incurable cancer who require prompt engagement in decision-making. In response to the need to engage in quality patient-centered communication, an interprofessional team, representing medicine, nursing, social work, and spiritual care developed a simple, single-page tool that summarizes the prognosis and treatment plan for patients with incurable cancers. This pilot study evaluates the communication guide, Communicating Oncologic Prognosis with Empathy (COPE), for discussing prognosis and treatment options for cancer patients. Methods: A pilot test of 30 participants with incurable cancer was completed at an oncology clinic. The communication guide was evaluated using a pre- and post-test design, participants completed a prognosis and treatment perception survey (PTPQ) prior to their first oncology appointment. Patients then met with their oncologist and the COPE guide was used to guide the discussion and patients received a copy of the COPE guide. The COPE guide was placed in the patient chart and other members of the healthcare team were able to use the tool to provide the patient with support and explore the patient’s response to information received. Patients completed the post-test PTPQ at 4 week follow up and completed exit interviews to assess patient reported impact on communication with medical team, caregivers, and quality of life. Results: Key findings revealed participants prefer receiving detailed information about prognosis and have differing perceptions about goals of treatment compared to the oncology team. The tool seemed to facilitate mostly accurate information recall regarding prognosis and treatment options. Conclusions: Despite the high value patients placed on knowing about prognosis and quality of communication with their medical team, the majority reported incongruent goals of treatment and likelihood of cure compared with their oncologist, highlighting major gaps in patients’ understanding of their prognosis. The COPE guide serves as a promising mechanism to enhance patient-centered communication about prognosis and treatment for patients with incurable cancer.
When should anti-cancer treatment be ended? Why and when to discontinue palliative chemotherapy.
Authors: Kondo Yuurin , Nakajima Maria Michiko , Nakajima Go , Hayashi Kazuhiko 
Published: November 2018

41 Background: Currently, palliative chemotherapy (PC) near the end of life is frequently discussed. It is important to know when it is appropriate to end PC to maintain the best quality of life. The criteria for discontinuation of anti-cancer therapy are often “exacerbation of patient’s condition,” “problems with toxicity,” or “patient refusal.” However, there is no clear agreement regarding when to end PC. Ending treatment is one of the most difficult decisions for oncologists. The purpose of this study was to determine clear reasons for the discontinuation of PC and to gain an understanding of the current situation regarding explanation of prognosis in clinical practice. Methods: This retrospective study included 144 patients with incurable cancer who had received PC and died between January 2014 and November 2016. We examined the reasons for discontinuation of PC and whether patients had completed end-of-life discussions, including a discussion of life expectancy, when their PC was terminated. Results: Causes of discontinuation of PC were as follows: 8.3% patient’s desire, progressive disease (PD) in 48.5%, poor performance status (PS) in 20.1%, and toxicity in 17.4%. In patients who chose to end anticancer therapy voluntarily, all patients received a clear explanation of their prognosis, including life expectancy. Among 67 patients with PD, 45 (67.1%) received information regarding their prognosis; 17 of 29 patients (58.6%) with poor PS received similar information. Among patients who ended PC due to toxicity, only 8 of 25 patients (32%) completed end-of-life discussions, including a discussion of life expectancy. In addition, death within 1 month from the discontinuation of PC occurred in 0 cases where treatment was discontinued due to patient’s desire, 10 cases (15%) due to PD, 10 cases (34.4%) due to PS, and 7 cases (28%) due to toxicity. Conclusions: This study shows that patients who discontinued treatment due to poor PS or toxicity had a shorter interval between the final PC and death. Moreover, it indicated that the details of the end-of-life discussion might be influenced by the reason for discontinuation of PC, including or excluding a discussion of life expectancy.
Adding shared laughter to optimise shared medicine.
Authors: Buiting Hilde M. , de Bree Remco , Brom Linda , Mack Jennifer W. , van den Brekel Michiel 
Published: November 2018

43 Background: Most people are familiar with the expression "laughter is the best medicine". By triggering endorphin release and strengthening relationships, it can be considered a perfect holistic care-approach. We explored the occurrence, acceptability, and functions of humor and laughter in patients with incurable cancer. Methods: We performed 16 in-depth interviews with patients with incurable cancer at the day-care unit of a Dutch comprehensive cancer hospital. We further performed and online questionnaire-study among 33 oncologists (41% of 81 approached) about experiences with humour and laughter in breast, lung, head and neck, or urological cancer. Results: Nearly all oncologists reported using humour (97%), and all reported to sometimes laugh during consultations; 83% reported experiencing a positive effect of laughter. These results were in line with patients’ experiences: Patients noted that humor always stayed alive, despite having incurable cancer. Apart from this human aspect, patients also used humor to broach difficult topics and to downplay challenges. Some patients explicated that the appreciation of humor was dependent on the type of humor, since humor is rather personal. Patients and oncologists acknowledged that using humor is delicate, and sometimes inappropriate, partly because they did not always share the same type of humor. Laughter, in contrast, was regarded as ‘lighter’ than humor, and could, accordingly, more easily be implemented. However, both patients and specialists cautioned against patients using laughter to avoid uncertainty or broach difficult topics. Conclusions: Our results suggest that patients and healthcare professionals can benefit from humour or laughter. Many conversations were joyful, even in the midst of medical challenges. Although humor is personal, laughter can be applied more easily. Healthcare professionals therefore need to have a basic comprehension of the impact of laughter to facilitate discussions, improve the doctor-patient relationship, and identify underlying wishes. If applied appropriately, shared laughter will possibly add to optimise shared medicine.
Frustration and distress during treatment for advanced renal cell carcinoma.
Authors: Bergerot Cristiane Decat , Battle Dena , Bergerot Paulo Gustavo , George Daniel J. , Hammers Hans J. , Jonasch Eric , Ljungberg Borje , Bex Axel , Dizman Nazli , Staehler Michael D. , Pal Sumanta K. 
Published: November 2018

47 Background: Treatment strategies for advanced renal cell carcinoma (aRCC) have improved over the past 15 years. Durable responses are now achievable, giving rise to the possibility of cure in a small proportion of this population. However, it is not clear how patients are coping with more protracted courses of treatment. We sought to determine sources of frustration among patients diagnosed with aRCC. Methods: We performed a cross-sectional analysis of data derived from an online survey distributed via social media from April to June, 2017. We assessed source of frustration using an open-ended question: “In your own words, what has frustrated you most about your medical care related to your diagnosis?”. We assessed distress using the Distress Thermometer. Qualitative content analysis was performed to characterize responses related to frustration. Descriptive statistics was generated and the Kruskal-Wallis test was used to explore the relationship between clinical characteristics and sources of frustration. Results: We enrolled 217 patients with aRCC. The majority were male (52.3%), and white (93.5%). Clear cell histology (84.2%) was the most common diagnosis. Patients reported high levels of distress (M = 6.4; SD = 2.8). Sources of frustration were documented in 71.9% of patients, and were most commonly related to distrust of the cancer care system (12.4%), fear of progression (11.5%), lack of information (11.1%), financial concerns (9.7%), communication between patient and physician (7.8%), treatment side effects (4.6%), lack of available research (4.1%), mistrust of physician’s knowledge (4.1%), and access to supportive care (2.8%). Higher levels of frustration were associated with higher levels of distress (P = 0.01). Patients with non-clear cell RCC more commonly reported an emotional source of frustration (P = 0.02). Conclusions: Patients with aRCC report high levels of distress and frustration with their diagnosis and treatment. The most frequent drivers of frustration can suggest opportunities to maximize support to patients and their families. A better understanding of their disease and prognosis, addressing financial concerns and offering psychosocial support may alleviate frustration amongst patients with aRCC.
Opioid prescribing upon discharge for patients with solid malignancies.
Authors: Lal Ashima , LaFollette Jennifer Ann , Terrell Constance 
Published: November 2018

50 Background: Pain is a common symptom associated with cancer resulting in increased health care utilization. We aim to study patients admitted with uncontrolled pain and review their discharge medications after development of an effective pain regimen while hospitalized. Anecdotally, we observe patients are being discharged with suboptimal regimens resulting in increased Emergency Department (ED) visits or readmissions. By identifying suboptimal opioid prescriptions we hope to improve care and patient satisfaction and minimize ED visits or readmission rates. The primary objective is to identify opportunities for improvement of opioid prescribing upon discharge for medical oncology patients. Methods: Retrospective study exempt from IRB review. We reviewed admitted patients with a solid tumor cancer diagnosis and consult to inpatient medical oncology at a safety-net hospital in an urban Southeastern population from June to November 2017 with data collected on 29 patients. Data was analyzed using descriptive statistics. Potential health-system cost avoidance was calculated. Results: 51% of patients were discharged with a lower daily oral morphine equivalent (DOME) than received while inpatient, with a median of 12 days until scheduled follow-up appointment. While 75% of patients were prescribed an adequate supply for long acting opioids, only 39% received an adequate supply of short acting opioids. 12 patients (41%) returned to the ED or urgent clinic within 30 days. 4 events were associated with a lower DOME and/or inadequate supply compared to their inpatient regimen. The total amount billed for missed opportunities showed the hospital was reimbursed only 25%. Conclusions: Opportunities to prevent discrepancies in discharge regimens exist. Pain regimens should be assessed for accuracy and supply at discharge and appointments. Patients should be discharged with a sufficient amount of opioids until their follow up, including ensuring insurance coverage of medication prescribed, with emphasis on patients maintaining their outpatient appointments. We plan to continue analysis post continuous QI initiative to improve clinical practice in pain management for patients with solid tumor malignancy.
Comparability of the Cancer Supportive Care Clinical Studies Collaborative (CSCCSC) study population to national referrals to other specialist palliative care services.
Authors: Currow David Christopher , Matsuoka Hiromichi , Allingham Samuel , Fazekas Belinda , Brown Linda , Vandersman Zac , Clark Katherine , Agar Meera 
Published: November 2018

63 Background: There are no agreed national nor international criteria for referral to palliative care. Key population characteristics have been defined to aid the generalizability of research findings in palliative care clinical studies. To codify differences in key demographic factors between patients with cancer participating in the Australian national Cancer Supportive Care Clinical Studies Collaborative (CSCCSC) phase III symptom control studies and the population referred to other Australian palliative care services. Methods: This study compares two contemporaneous consecutive cohorts generated through clinical trial participation and the national palliative care clinical quality improvement registry in Australia. Age, sex, cancer diagnosis, language, and socio-economic status were compared. Results: Cohorts were people with cancer: enrolled in CSCCSC phase III clinical studies (n=902; 17 sites); and registered by the Australian national Palliative Care Outcomes Collaboration (PCOC; n=75,240; 117 sites). Participants in CSCCSC studies were younger than those of PCOC (median 71 (IQR 62, 79) versus median 73 (IQR 63, 81); p=0.003 respectively). There was no significant difference in sex (p=0.483). Patients who spoke English accounted 95.0% of enrollees in the CSCCSC group and 92.2% in the PCOC group (p = 0.004). Clinical study participants had higher socioeconomic status that the PCOC group (p=0.022). Conclusions: Overall, the slightly different demographic patterns are reflective of the differences often seen between phase III trials and the populations to whom the results will be applied. Age differences particularly need to be taken into account when considering the best way to apply each study’s findings.