bluuebunny/crossref_metadata_2025_split huggingface dataset:
Analysis of palliative care studies with joint models for quality-of-life measures and survival.
Authors: Tosteson Tor D , Li Zhigang , Yang Qian , Frost H. Robert , Bakitas Marie 
Published: February 2017

41 Background: In palliative care studies, the primary outcomes are often health related quality of life measures (HRLQ). Randomized trials and prospective cohorts typically recruit patients with advanced stage of disease and follow them until death or end of the study. During this time, HRLQ measures are collected at regular intervals. The typical analysis involves comparing the means of two or more intervention or exposure groups at specific times from entry into the study. An important feature of such studies is that, by design, some patients, but not all, are likely to die during the course of the study. For instance, in the Dartmouth ENABLE II study (Bakitas et al., 2009), 60% of patients died during the study. This feature affects the interpretation of the conventional analysis of palliative care trials and suggests the need for specialized methods of analysis. Methods: We have developed a “terminal decline model” for palliative care trials that, by jointly modeling the time until death and the HRQL measures, leads to flexible interpretation and efficient analysis of the trial data (Li, Tosteson, Bakitas, 2012). Importantly, it allows the estimation of the quality of life in the months preceding death, and specifically incorporates data for patients not dying during the study. At the same time, it permits the efficient estimation and interpretation of HRQL effects as measured in the conventional analysis as the difference in HRQL at specified times from enrollment conditional on being alive. Finally, it allows the estimation of the HRQL weighted survival or quality adjusted life years (QALY). Results: Based on the terminal decline model, survival distributions are shown affect the conventional estimates of HRQL trends in palliative care trials. A direct estimate for quality of life at specified times prior to death is provided. The methods are illustrated with ENABLE II data as an approach for improving the conduct of palliative care studies. Conclusions: Proper interpretation of palliative care studies requires consideration of the joint distribution of quality of life measures and survival as in the terminal decline model.
Program development in palliative care: Results from the NCI Community Cancer Centers Program (NCCCP).
Authors: Padgett Lynne Slaughter , Davis Mary Helen , Tallen Colleen , Carrigan Angela , Rowland Julia Howe 
Published: February 2017

42 Background: Growing national attention to the need for metrics to document delivery of quality palliative care has resulted in a proliferation of measures and standards (e.g., Commission on Cancer, Quality Oncology Practice Initiative). While these standards offer benchmarks to strive for, there are few resources for programs to self-assess development of organizational infrastructure to achieve them. Methods: The NCCCP Cancer Palliative Care Matrix (PCM) is a performance measure and evaluation tool to aid palliative care program development in the community setting. The PCM was completed annually by 21 NCCCP sites from 2010 to 2013. Four domains related to quality measures are reported here. Proportional-odds logistic regression models were used to evaluate the relationship between year and level of response. Results: Variations in program development were seen in the quality domains of symptom assessment, palliative care services offered across the continuum of care, identification for palliative care services, and use of quality measures. In 2010, 13/21 sites reported that symptom assessment were not performed or performed inconsistently. By 2013, 13 sites reported consistent assessment with standardized tools, with 5 of these 13 able to review sequential patient assessment (p=0.002). Similar gains were seen in the domains of providing services across the continuum of cancer care and utilization of quality measures such as patient/provider satisfaction and service utilization (p=0.004, p<0.0001). Despite three years of effort, little change was seen in patient identification processes for palliative care services with only 6 of 21 sites in 2013, compared to 5 in 2010, reporting improvement in "upstream" patient identification regardless of cancer stage (p=0.065). Conclusions: Data suggest the utility of the PCM to evaluate process and quality outcomes in palliative care program development. In addition, identification of challenge and growth areas can be used to develop interventions to address quality performance in both clinical and research contexts.
Implementation of clinical triggers for palliative care consultation on a gynecologic oncology inpatient service: A pilot study.
Authors: Lefkowits Carolyn , Courtney-Brooks Madeleine , Teuteberg Winifred , Leahy Janet , Sukumvanich Paniti , Kelley Joseph L 
Published: February 2017

51 Background: Our objectives were to (1) Assess the feasibility of creating clinical triggers for Palliative Care (PC) consultation on a large gynecologic oncology service and (2) Use triggers to increase PC consultation rates among trigger positive patients. Methods: Clinical triggers for PC consultation are listed below. Over a six month period, patients meeting triggers were prospectively identified and PC consultation was requested for those patients. Retrospective chart review was used to identify patients meeting triggers and gather clinical information. PC consultation rates were compared for patients meeting triggers in the 6 months pre and post trigger implementation. Statistical analysis utilized χ2 test, Fisher’s exact test and independent samples t-tests. Results: There was no difference in PC consultation rates among patients meeting triggers between the pre and post-triggers periods (see table). There was also no change in time from admission to PC consult (median time to PC consultation 1.56d vs. 2.24d, p=0.28) and no change in overall PC consultation volume (mean 17.3 new PC consults per 100 admissions/month vs. 18.5, p=0.67). Of the 38 patients in the post-triggers period who were not seen by PC, 50% (n=19) were inaccurately deemed trigger negative during their admission and 13% (n=5) were not screened at all. Conclusions: Creation of clinical triggers for PC consultation was feasible in terms of investment from relevant stakeholders. Trigger implementation was not associated with increased rates of PC consultation for those patients. High baseline rates of PC consultation and screening process issues contributed significantly to the lack of change in PC consultation rates. Use of clinical triggers may still hold promise as a strategy for standardizing PC consultation patterns and capturing subgroups of patients with high needs. Next steps include modifying our clinical triggers and screening process and expanding into the outpatient setting. [Table: see text]
Perspectives on palliative care in a multisite oncology practice.
Authors: Bishop Kenneth D. , Taber Angela Marie 
Published: February 2017

52 Background: The Institute of Medicine reported that many cancer patients do not receive palliative care to manage symptoms. It is possible that practitioners do not identify palliative care as an important component of high-quality cancer care, or do not know how to most efficiently utilize available palliative care consultative services. Methods: An anonymous electronic survey was sent to physicians, nurses, nurse practitioners, physician assistants, and social workers (n=99) in our multi-site, single-institution Cancer Center. Results: Sixty-five responses were received (66% response rate). Eighty-three percent of respondents reported working primarily in the outpatient setting. Fifty-nine percent reported their patients ‘rarely use the ER for pain management’ while 16% reported their patients ‘frequently require ER visits for pain management’. Ninety-two percent considered palliative care ‘an integral part of a multidisciplinary team’ while 6% reported palliative care consultation to be ‘cumbersome to consult and coordinate with’. The most common reason for consultation was end-of-life discussions (38%) followed by chronic pain management (33%). Seventy-seven percent reported consulting between 1 and 5 times per month, 14% between 6-10 times per month, and 5% greater than 11 times per month. Thirteen percent reported that they were able to manage patient symptoms adequately themselves. The average rating for convenience of consulting palliative care was 3.8/5. Fifty-eight percent reported the most effective means of communication with palliative care consultants was through the medical record, whereas 42% reported that most effective communication took place in person. Sixty percent reported a preference for palliative care practitioners from within the division of hematology/oncology. Conclusions: Our survey suggests that the majority of oncology practitioners value palliative care consultation and are willing to incorporate palliative care services into patient management. It is possible that practitioners overestimate their utilization of palliative care services and that optimizing the convenience of consultation and communication would result in better integration of palliative care for cancer patients.
Embedding palliative care into care coordination.
Authors: Zachariah Finly , Gallo Mariela , Loscalzo Matthew , Crocitto Laura E. 
Published: February 2017

62 Background: The Institute of Medicine (IOM) identified care coordination as a key strategy with potential to improve the safety and effectiveness of implemented care by deliberately organizing patient care activities and sharing information among all participants concerned. Palliative care maximizes quality of life for patient and family in serious illness and can be provided early and concurrently with curative therapies. At City of Hope National Medical Center (COH), we developed a pilot program for bladder cancer patients undergoing cystectomy to provide the benefits of care coordination and palliative care. Methods: 72 patients underwent cystectomy at COH from 2011-2013, the average case mix index was 3.51, the average length of stay (LOS) was 10.65 days, the LOS index was.92, Cost index 1.61, 30-day readmission rate 32.14%, and the most common causes for readmission were infection and dehydration. Based on comparative data, the urology service supported development of a novel pathway by a multidisciplinary team. The goals of the pathway are to facilitate navigation through the healthcare system, integrate tablet-based bio-psycho-social screening to proactively address patient and caregiver needs and goals, optimize medications to improve symptom management and recovery, empower patients with teach-back education, have anticipated interventions for likely readmission reasons, and develop effective collaboration amongst multidisciplinary providers across settings. The metrics include LOS, readmission rates, patient and family satisfaction, advanced directives on file, and cost index. Results: Hospital leadership and provider buy in was obtained, a daily rounding multidisciplinary team was created, change champions were identified, staff engagement increased, and COH and community agency staff were equipped with needed skills and support. Care model diagrams and clinical pathway orders were developed. Education materials were revised and updated. The pilot launched in April of 2014. Conclusions: We believe that a care coordination model with early integration of palliative care will improve the effectiveness of care delivered to our bladder cancer patients. A six-month retrospective review will be done to assess metric achievement.
Interdisciplinary community oncology clinic intervention to improve pain control for all patients.
Authors: Elnadry Jeanne , Duarte Tina , Yang Gregory John C. , Badari Ambuga 
Published: February 2017

63 Background: In rural Yuma, AZ there are too few palliative care specialists to meet the needs of the population. This report presents a unique approach to interdisciplinary care for pain management beginning early in cancer care. To address this need a palliative care specialist collaborated with the entire clinical staff of the community cancer center, including physicians, nurses, social worker, pharmacist, and medical assistants, to initiate a new distress screening tool and develop an interdisciplinary collaborative practice model for pain management. Methods: Data was analyzed from 274 consecutive patients using a review of systems form which was modified 3/2014 to include more information regarding pain, depression/anxiety, communication about illness, spiritual needs, and educational needs, and from 55 patients admitted to home hospice. All clinical staff reviewed the data together and mapped clinical processes. A pain assessment protocol was developed for nurses and medical assistants, who gave the assessment summary to the physician seeing the patient. Further training for nurses taught an algorithm to collaborate with physicians for pain medication orders driven by the assessment findings. Results: About 1/3 of patients had significant concerns about pain. End-of-life data showed that 31% of 55 patients admitted from the cancer center to a local hospice had moderate to severe pain (pain score 4-10) at the time of hospice admission. 88% of these patients’ pain was controlled within 48 hours of admission to home hospice, with pain score 0-3. Data for 274 consecutive clinic patients showed that 30% of patients had concerns about pain, 30% about advanced care planning and communication, and 32% about anxiety, depression, and coping. Of the 162 patients who reported distress, 57% reported distress in 2 or more domains. Conclusions: Hospice data showed that nearly all cancer patients with moderate to severe pain could have pain control within 48 hours. Patients undergoing treatment should be able to have similar results, but were not. Follow-up data collection to assess effect of the collaborative practice model intervention is planned for August 2014.
Putting pediatric palliative care in prime time.
Authors: Kirch Rebecca A , Ullrich Christina K 
Published: February 2017

68 Background: For patients and families at any age and stage, treating the symptoms and stress of cancer is as important as treating the disease. Palliative care has hit its stride as one of the nation’s fastest growing health care trends, with a robust evidence base, new quality standards, increasing awareness and understanding, and a related public policy agenda. This momentum positions pediatric palliative care as an essential aspect of advancing childhood cancer survivorship with high quality of life – particularly important for children given the documented symptoms, late effects and disabling conditions they experience into adulthood and across their lifetime. This oral presentation will describe pediatric palliative care’s prominent role in addressing the challenges of childhood cancer and survivorship across the continuum, providing practical clinical case study context and highlights of consumer research findings and an advocacy agenda helping address palliative care’s “identity problem” that affects access to quality care. Methods: This presentation provides practical information for integrating palliative care to benefit children and families, including lessons learned through implementation of early pediatric palliative care alongside disease-directed treatment under the Concurrent Care for Children Requirement and other initiatives. It will also identify available resources for communicating about palliative care based on consumer research from the American Cancer Society and Center to Advance Palliative Care. Results: This presentation will inform and inspire person-centered and family-focused activities to advance early integration of palliative care in research and clinical practice. It will also highlight opportunities for active involvement in the QOL national movement to improve quality cancer care. Conclusions: Audience will understand benefits of pediatric palliative care and strategies supporting its delivery through the pediatric concurrent care experience in oncology. They will also gain improved proficiency in communicating about palliative care, and will be well-positioned to engage in the QOL legislative campaign to bring palliative care everywhere as an essential element of quality care.
Disparities in hospitalized cancer patients receiving palliative care consultation.
Authors: Smith Cardinale B. , Ornstein Katherine , Stefanis Lee , Meier Diane E. , Morrison R. Sean 
Published: February 2017

7 Background: Racial and ethnic disparities in healthcare have been well documented among minority groups with respect to access to care, receipt of care, and quality of care. As a result, minority populations are diagnosed with late stage cancer and have inferior outcomes likely leading to increased suffering. Little is known, however, about disparities in access to and outcomes of patients receiving specialty palliative care (PC). Methods: We used data from the Palliative Care for Cancer Patients (PC4C) study, a multisite observational study of the effect of inpatient PC on patient health outcomes and health services use among advanced cancer patients. We limited our sample to patients that received PC from established, interdisciplinary consult teams. We used univariate analyses and multiple regression analyses to compare differences in outcomes among minority (black and Hispanic) and non-minority patients receiving PC. Results: 583 (19%) patients received a PC consult. Of those, 166 (28%) were minorities and 418 (72%) non-minorities. Mean days to a palliative care consult was 4.4 vs. 3.2 in non-minorities and minorities, respectively (p=0.65). At baseline, minority patients reported a higher burden of symptoms as measured by the condensed memorial symptom assessment scale (CMSAS). Similarly, they were less likely to have talked about their wishes with their doctor (p=0.04); less likely to have completed a living will (p<0.001), or have a proxy (p<0.001); had no difference in pain but were less likely to be taking pain medications (p<0.001) or report relief from pain medicines (p=0.05). After PC consult all CMSAS symptoms improved for minority patients (except worry; p=0.03). Additionally, after PC consult there were no longer any significant differences among minorities with respect to discussing their wishes (p=0.27), DNR completion (p=0.72), proxy assignment (p=0.22) and taking pain medications (p=0.22) when compared to non-minorities. Conclusions: PC is associated with improvements in symptom control and discussions of care goals among minority patients who have worse baseline health assessments. Future efforts need to focus on increasing the availability and use of specialty PC for this at-risk population.
Performance status, quality of life, and survival in patients with advanced cancer referred to palliative care: A pilot study.
Authors: Gilbertson-White Stephanie , Weckmann Michelle , Donovan Heidi , Sherwood Paula R 
Published: February 2017

77 Background: Patients with advanced cancer often need specialized palliative care (PC) for aggressive symptom management as their cancer progresses. The purpose of this study is to evaluate the feasibility of following patients with advanced cancer referred to PC for symptom management. The aims are to: 1) describe survival status at 12-wks post PC referral, and 2) compare time to PC referral, performance status, and quality-of-life (QOL) at baseline across survival status groups. Methods: Patients (N=20) with advanced cancer newly referred to PC were recruited. Date of cancer diagnosis, date of referral to PC, and survival status were abstracted from the medical record. The number of weeks was calculated from the date of cancer diagnosis to the date of PC referral. Palliative Performance Status (PPS) scale was used to measure performance status. Higher % scores indicate better performance status. SF-36 was used to measure QOL. Higher scores indicate higher perceived QOL. Results: At 12-weeks post PC referral, 6 patients were alive, 8 patients were lost to follow-up, and 6 patients had died. Missed appointments with PC or cessation of cancer treatments were primary reasons patients were lost to follow-up. Patients alive at 12-wks had the best PPS scores at baseline (mean=58%) and the shortest length of time between cancer diagnosis and PC referral (mean=81.5 wks). Patients lost to follow-up had the worst PPS scores at baseline (mean=44%) and the longest time to PC referral (mean=745 wks). No differences were found on the SF-36 subscale scores. Conclusions: Performance status was a strong predictor of survival status at 12-wks post PC referral. Patients with the longest time between diagnosis and PC referral were most likely to be lost to follow-up. All patients with advanced cancer reported significant declines in QOL. Further research is needed to understand how time to PC referral is associated with missed appointments or decisions to stop cancer treatments. Prospective research from the time of diagnosis with advanced cancer through the end-of-life is needed to better understand how PC can help maintain performance status and QOL for as long as possible.
Coping with uncertainty: A qualitative study of 33 palliative care consultations among patients with advanced cancer.
Authors: Tejani Mohamedtaki Abdulaziz , Kamen Charles Stewart , Mohile Supriya Gupta , Gramling Robert E. 
Published: February 2017

92 Background: Despite scientific advances, uncertainty remains an inherent and significant issue in clinical practice. Among patients with advanced cancer, uncertainty about the future can lead to distress, loss of sense of control and lower quality of life. Helping patients manage uncertainty is a core domain of patient-centered care. Little is known about how palliative care providers work with cancer patients to accomplish this goal. Methods: We performed descriptive analysis of transcripts from audio recorded inpatient palliative care consultations among adult cancer patients referred for ‘goals of care’ or ‘end of life decision making.’ Each transcript was read as a whole and then again line by line to code verbal expressions of uncertainty. Excerpted segments dealing with uncertainty about the future were grouped and analyzed by an experienced qualitative research working group. Results: 33 consultations were analyzed: 53% men, median age 62 and median survival 3.6 weeks. Multiple expressions of uncertainty were identified – 106 by patients/families and 56 by providers. A majority (63%) were centered on the inevitable uncertainty in predicting clinical course at the end of life. Palliative care providers managed this type of uncertainty in three main ways: (a) pairing expressions of unpredictability with reiteration of what was certain/known at time of consultation (e.g. ‘we will not let you suffer’); (b) utilizing inherent uncertainty of future to promote hope and faith (e.g. ‘nobody knows how long you are going to live’) and (c) reassurance that multi-disciplinary providers would convene to provide consensus and clarity for next visit (e.g. ‘we will all put our heads together and come up with exactly which options are available.’). Conclusions: Uncertainty is highly prevalent during end of life consultations with advanced cancer patients. Palliative care providers use validating strategies to help patients acknowledge and cope with what is inherently uncertain about their future. These methods can be used to develop communication training and guidelines for use with advanced cancer patients at the end of life.