bluuebunny/crossref_metadata_2025_split huggingface dataset:
Are families the barrier? Evaluating attitudes toward early integration of palliative care in pediatric hematopoietic stem cell transplant.
Authors: Levine Deena R. , Baker Justin N. 
Published: February 2017

112 Background: The benefits of early integration of palliative care (PC) in oncology have been well established yet, there remain significant barriers to PC integration, especially in the setting of pediatric hematopoietic stem cell transplant (HSCT). HSCT patients are prone to a great degree of treatment related toxicity and are at high risk for morbidity and mortality and, while ideally suited to benefit, inherent factors in this cure oriented field preclude the integration of PC services. Most notably, family receptivity to PC is often perceived as a barrier in HSCT yet there is no data on family attitudes toward PC in this setting. This study aimed to evaluate perceived symptom burden and patient and parent attitudes toward early PC integration in pediatric HSCT. Methods: After IRB approval, development and pre-testing, novel survey tools were administered to HSCT patients and parents. Eligibility criteria included parent of an HSCT recipient < age 10 or patient/parent dyad for patients aged 10-17, time from HSCT > 1 month and < 1 year, English-speaking, and consent/assent. Data was assessed for trends in response content frequencies, percentages and parent/child concordance. Results: Interim analysis of the first 34 participants revealed high levels of perceived symptom related suffering in the first month of HSCT with suffering from: nausea 96%, loss of appetite 88%, diarrhea 88%, pain 83%, depression 79%, anxiety 75%, and constipation 42%. 90% of patients and 71% parents expressed that a great deal or a lot of attention should be paid to quality of life from the start of HSCT. The majority of patient and parent respondents (60/46%) indicated they would likely want to meet with PC early in HSCT and very few reported definite opposition (0% children, 4% parents). Conclusions: Pediatric HSCT patients experience a high degree of symptom related suffering, perceive quality of life as a high priority, and are largely in favor of early PC involvement. Our findings suggest that family receptivity should not be a barrier to early PC in pediatric HSCT and that aggressive cure directed therapy can and should be accompanied by aggressive quality of life directed care through early PC integration.
Blood transfusions at end of life for stem cell transplant patients.
Authors: Wang Winnie S , Ma Joseph D. , Nelson Sandahl H , Revta Carolyn , Buckholz Gary T , Mulroney Carolyn M. , Roeland Eric 
Published: February 2017

115 Background: Transfusions are an essential palliative tool in the stem cell transplant (SCT) population. Limited data exist regarding transfusion practices at end-of-life for SCT patients and whether these practices may limit enrollment in hospice. Methods: A retrospective chart review was conducted of deceased patients with hematologic malignancies who underwent SCT at an academic medical center from 2011 to 2015. The primary objective was to determine the difference between the dates of last transfusion and death in patients enrolled and not enrolled in hospice. A secondary objective was evaluation of the number of transfusions between groups. Data were compiled from a single electronic medical record. Descriptive analyses were performed. Days to last transfusion were analyzed using the Wilcoxon-Mann-Whitney test. Number of packed red blood cell (PRBC) transfusions and platelets transfusions on the last day were analyzed using Fisher and chi-squared tests, respectively. Results: A total of 633 SCT were performed from 2011 to 2015 including 39% (n = 245) allogeneic and 61% (n = 388) autologous transplants (n = 29 patients had 2 transplants). Mean ± SD age of SCT patients was 55 ± 13 years. As of January 2016, 20% (n = 119) of these SCT patients have died. Of those that died, 15% (n = 18) were enrolled in hospice. For SCT patients enrolled in hospice, the mean ± SD time of last blood transfusion from death was 42.3 ± 63.4 days, with mean ± SD 0.67 ± 0.77 units of PRBC’s and 0.72 ± 0.75 units of platelets administered. For SCT patients not enrolled in hospice, the mean ± SD time of last blood transfusion from death was 14.2 ± 47.9 days, with mean±SD total 0.69 ± 1.03 units of PRBC’s and 1.14 ± 1 units of platelets administered. Hospice patients had a statistically significant longer number of days until last blood transfusion compared to non-hospice patients (p < 0.001). There was no difference between SCT patients enrolled in hospice and not enrolled in PRBC transfusions (p = 0.069), but there was a significantly higher amount of platelet transfusions in patients not enrolled in hospice (p < 0.005). Conclusions: This data suggests that time to last transfusion may be a significant obstacle for SCT patients when enrolling in hospice, but requires further validation.
The availability/accessibility gap of palliative care and supportive care services at 40 National Cancer Institute-designated cancer centers.
Authors: Hutchins Kathryn , Hamlyn Geoffrey , Johnston Abby , Thomas Rishonda , Tian James , Kamal Arif 
Published: February 2017

122 Background: All NCI-designated, comprehensive cancer centers report having consultative palliative care services alongside six other supportive care services. Inaccuracies in the understanding of these services among frontline office staff may undermine their accessibility to patients. We investigated how easily new patients could access these services when first contacting a major cancer center. Methods: We used a ‘mystery shopper’ format to simulate calls made by a family member of a recently diagnosed patient. We used a standardized call script, describing a female patient, age 58, recently diagnosed with inoperable liver cancer. We called each center four times on different days and evaluated quantitative and qualitative components. Descriptive statistics were calculated for each quantitative measure. Results: We placed 160 calls to 40 NCI-designated cancer centers. 38.2% of callers were unable to receive complete information about supportive care services. Overall, only 37.6% of callers (60.8% of those reaching someone who could answer questions) were told all 7 supportive care services were offered. In 9.5% of calls, call recipients gave an answer other than “yes” to whether the cancer center offered palliative care. Callers were told regarding palliative care: that it was for end of life patients only (2 calls), that there weren’t doctors who focused on symptom management (3), its availability depends on review of medical records (2), or that the call recipient was unsure either of the availability of palliative care (10), or did not know what the term meant (2). Availability responses other than “yes” were obtained in the following frequencies: multidisciplinary approach (14.6%), patient navigation (12.1%), genetic assessment (9.5%), psychological services (7.6%), and cancer education services (6.4%). Conclusions: Despite the stated availability of seven key supportive care services, accessibility was limited in one-third of calls. In about 10% of cases where a person was reached, the call recipient was unable to confirm that palliative care was offered. Further research is needed to close the availability vs. accessibility gap in oncology palliative and supportive care.
Oncology patients in the health care safety net: Is it too late for early palliative care?
Authors: Harris Heather A. , Kinderman Anne , Safier Leslie 
Published: February 2017

128 Background: Studies have suggested that uninsured and Medicaid patients are more likely to present with late-stage cancer than Medicare patients, and may be more likely to be admitted urgently or emergently. However, studies of palliative care interventions for cancer patients suggest that the greatest impact can be achieved if these services begin “early” (≥ 90 days prior to death). In our urban public hospital, we examined where patients receive their initial cancer diagnosis, and at what stage they are diagnosed, in order to determine how to best implement community-based palliative care services. Methods: Retrospective cohort analysis of cancer patients diagnosed over a five year period. Hospital tumor registry data were used to determine the location of diagnosis (inpatient vs. outpatient), stage and type of cancer at diagnosis, and patient status at the end of the study period (alive vs. deceased). Results: Of the 2,928 patients diagnosed with cancer, 26% of patients (n = 759) were diagnosed while hospitalized. Patients who received their diagnosis while hospitalized were more likely to be diagnosed with stage 3-4 disease (49%, n = 372), vs. stage 0-1 (21%, n = 163). 25% of patients who received their diagnosis in the inpatient setting died within 90 days of initial diagnosis. Patients diagnosed in the outpatient setting were more likely to be diagnosed with stage 0-1 (40%, n = 865), vs. stage 3-4 (32%, n = 688). Patients diagnosed while hospitalized were 2.9 times more likely to be diagnosed with late stage disease, compared to those diagnosed as outpatients (95% CI 2.3-3.5, p < 0.0001). Conclusions: A large minority of patients received their cancer diagnosis while hospitalized, and were more likely to be diagnosed with late-stage disease. Additionally, a significant proportion of these patients died within 90 days of their initial diagnosis. In order to provide "early" palliative care for cancer patients in public hospitals, palliative care programs may need to offer initial consultation visits while patients are hospitalized, and then connect them with prompt outpatient follow-up. Safety net programs with palliative care services for cancer patients should emphasize continuity across inpatient and outpatient settings.
Healthcare utilization among cancer patients prior to hospice.
Authors: Ray Emily Miller , Riedel Richard F. , Rushing Christel N. , Galanos Anthony N. 
Published: February 2017

135 Background: The integration of palliative medicine in oncologic care has become increasingly recognized and supported. We have previously reported improved health system and quality of care outcomes for solid tumor patients admitted to our novel, fully-integrated palliative care (PC) and medical oncology inpatient service at Duke University Medical Center (DUMC). In this study, we explored healthcare utilization in patients specifically discharged to hospice pre- and post-PC integration. Methods: We conducted a retrospective cohort study of hospitalized patients on the solid tumor unit at DUMC who were discharged to hospice care between September 1, 2009-June 30, 2010 (pre-PC integration) and September 1, 2011-June 30, 2012 (post-PC integration). Cohorts were compared on the following outcome variables occurring within 30 days prior to discharge to hospice: number of hospitalizations, ICU days, ED visits, invasive procedures, subspecialty consultations, radiologic studies, medical oncology clinic visits, and use of chemotherapy or radiation. Wilcoxon rank-sum and Chi square tests were used for statistical analyses. Results: A total of 296 patients were included (133 pre-PC integration; 163 post-PC integration) in the analyses. Patient characteristics were well matched between cohorts. The overall mean age was 63 years (range 25-96), 62% were Caucasian, 51% were male, and 98% of patients had recurrent or metastatic disease. Of particular note, there were no significant differences noted between cohorts with regards to the resource utilization outcome variables assessed. Conclusions: Understanding healthcare utilization in this patient population is of great interest to clinical providers and policymakers alike. While we have previously demonstrated the benefit of integrating palliative care and medical oncology for reducing hospital readmissions and length of stay, this study shows no significant impact of an integrated approach on the utilization of healthcare resources measured within the 30 days prior to discharge to hospice. This may reflect the aggressive approach to management of symptoms for end-of-life patients, which often involves invasive procedures, use of imaging, and other resources to meet their needs.
Palliative outpatient hot clinic: Rapid access for oncology patients visiting emergency department in a tertiary hospital in Singapore—A 1-year experience.
Authors: Yee Choon Meng , Koh Mervyn Yong Hwang , Lee Jia Fang 
Published: February 2017

137 Background: Oncology patients often present with symptoms at Emergency Department (ED). While most patients require admission for further management, some patients can be discharged from ED with outpatient follow-up. However, most patients were given 4 to 6 week appointment. In the light of this service gap, our department collaborated with ED to facilitate rapid access to Palliative Outpatient Hot Clinic (POHC) within 3 working days from ED visit in 2015. Methods: We performed a retrospective review of all patients seen in the ED who satisfied the referral criteria to POHC. The time / date of ED visit and basic demographics of patients were collected. Various outcomes of POHC referral were documented using a pre-determined protocol. Results: 17 out of 68 (25%) patients who attended ED and referred to POHC were included. 11 (64.7%) patients were seen after-office hours. 12 (70.6%) patients were ≥ 60 years old, 14 (82.4%) were male, and 11 (64.7%) had Eastern Cooperation Oncology Group (ECOG) ≤ 2. Among them, 6 (35.3%) patients were known to Palliative Home Care Service and 5 (29.4%) patients were referred after-office hours. The most common oncological diagnosis was gastro-intestinal carcinoma (N=6; 35.3%). 8 (47.1%) patients were receiving oncological treatment. All patients were referred for poor symptom control [Pain (N = 8; 47.1%), dyspnoea (N = 5; 29.4%) and vomiting (N = 1; 5.9%)]. 10 (58.5%) patients were given an appointment with POHC within 3 days. 4 (23.5%), 7 (41.2%) and 10 (58.5%) patients were seen in POHC within 3, 7 and 30 days of ED visit respectively. Among 13 patients who were not seen within 3 days, 7 (53.8%) referrals were screened and rescheduled, 3 (23.1%) were readmitted to hospital; 2 (15.4%) requested to change appointment and 1 (7.7%) defaulted the appointment. 10 (58.5%) patients were eventually seen by POHC. Conclusions: Rapid access to POHC is vital in the partnership with ED to allow the seamless and timely provision of Palliative Care for Oncology patients.
Developing a supportive oncology program in a cancer institute: Needs assessment.
Authors: Martins-Welch Diana , Liberman Tara , D'Olimpio James , Carney Maria 
Published: February 2017

141 Background: Cancer patients experience significant symptom and psychosocial burden (Temel JS, et. al. N Engl J Med. 2010 Aug 19; 363(8):733-42. Early palliative care for patients with metastatic non-small-cell lung cancer.). Integration of supportive oncology programs within cancer centers has developed since the findings of Temel and Jackson. Addressing a growing need to manage patients comprehensively, the Northwell Health Divisions of Geriatric and Palliative Medicine and Hematology and Oncology partnered to initiate a community-based supportive oncology program. A needs assessment was completed of the providers staff, and important stakeholders. Methods: A sixteen-question survey was created and distributed to the staff at the cancer center. Questions focused on providers’ need for support in fifteen areas. The target audience included physicians, fellows, mid-level providers, registered nurses, social workers, dietitians, and care navigators. A student intern administered surveys over a six-week period. Results: A total of 61 surveys were collected. Of these, 30 were completed by registered nurses, 13 by physicians, 9 by mid-level practitioners, and 3 by social workers. Physicians expressed the highest level of need (> 4.5/5) related to nutritional status, psychosocial factors and pharmaceutical review. Mid-level providers expressed highest level of need related to pain and depression. Nurses expressed highest level of need related to psychosocial factors, pain, depression, fatigue and pharmaceutical review. The average level of need across all areas and all respondents was 4.2 on a 5 point scale. The biggest challenge identified was lack of time to perform comprehensive assessments of patients. Conclusions: A high level of need for a supportive oncology program was identified. Per our assessment, providing comprehensive care with an emphasis on symptom control, nutritional and psychosocial support, and pharmaceutical review would benefit both providers and patients. Time constraints were identified as an issue by all practitioners and staff. The survey results supported the need for an added level of multi-disciplinary support for oncologists to care for cancer patients in the community.
A model of early integration of palliative care into oncology care for patients with metastatic colorectal cancer.
Authors: Ursem Carling Jade , Cantino Laura , Maravilla Ingrid , Thompson Nicole , Atreya Chloe Evelyn , Bischoff Kara 
Published: February 2017

142 Background: Current NCCN guidelines recommend that “institutions should develop processes for integrating palliative care into cancer care.” However, it is not clear what the best method is for implementing this integrated care. Palliative care needs specific to patients with metastatic colorectal cancer (mCRC) and best practices for integration of outpatient palliative and oncologic care in mCRC are not well understood. Methods: We conducted a pre-post prospective cohort study to evaluate the palliative care needs of mCRC patients and the implementation of an integrated palliative care program. In both the control and implementation phase, we enrolled patients with mCRC within 90 days of diagnosis or establishing care for mCRC at UCSF. Patients were surveyed regarding their symptoms, quality of life, psychosocial concerns, functional status and understanding of prognosis. During the control phase, patients received usual oncologic care. Based on survey results from the control phase, we designed a palliative care program to target the needs identified. In the intervention phase, patients are receiving longitudinal palliative care integrated into their usual cancer care. Results: The 30 patients in the control phase reported anorexia, fatigue and poor quality of life as their most common symptoms. Common psychosocial challenges were transportation, insurance/financial and difficulty with treatment decisions. Patients also had unrealistic expectations of their prognosis. In order to improve these identified issues, we designed and implemented an integrated palliative care program that includes weekly multidisciplinary meetings with oncology and palliative care providers and proactive palliative care visits from the time of diagnosis, which occur within the oncology clinic at a time that coincides with oncology visits. Conclusions: Physical symptoms, psychosocial concerns and poor prognostic awareness are common among patients with mCRC. We have implemented an integrated palliative care program to address these needs. Evaluation of the effectiveness of this intervention is ongoing.
A qualitative investigation of mindfulness practice to support advance care planning (ACP).
Authors: Johns Shelley A. , Cottingham Ann H. , Beck-Coon Kathleen A. , Helft Paul R. 
Published: February 2017

15 Background: Despite ongoing attempts to increase ACP in the U.S, a national longitudinal study of patients with cancer found no significant change in participation in end-of-life (EOL) discussions or living will completion between 2000-2012. A key barrier to ACP includes emotional discomfort talking about EOL care preferences. Mindfulness practices facilitate emotional regulation through present-centered awareness and non-reactive coping. In this pilot, an intervention combining mindfulness training, mindful communication skill development, and information about ACP was hypothesized to increase ACP in patients with cancer. Methods: The Mindfully Optimizing Delivery of End-of-Life Care (MODEL Care) intervention provided 12 hours of training to 13 patients with advanced-stage cancer and their family CGs (n = 13 dyads). Training included breath awareness, sitting meditation, mindful movement (yoga), mindful communication, and ACP information. Patients reported on participation in ACP behaviors at baseline and 4 weeks post intervention. Patients and CGs participated in semi-structured qualitative interviews after MODEL Care that were recorded, transcribed, and coded for key themes. Results: Compared to baseline, patients made notable improvement in ACP behaviors, including having goals of care conversations with their oncologist (p = .03) and family CG (p = .06). Qualitatively, patients and CGs reported an improved ability to “pause” and effectively manage tender emotions, coupled with improved communication and connection between patient and caregiver: “It kind of reminded us both that we need to make a conscious effort to ensure communication occurs on important things”; “We’ve been more in sync than we ever have been.” Moreover, MODEL Care reportedly facilitated thinking about the future to “do what we need to do” and “get things prepared." Conclusions: The MODEL care intervention improved patient and CG ability in areas foundational to ACP engagement: reduced emotional reactivity, communicating about difficult issues, and understanding relevance of ACP. Findings support the potential use of mindfulness training to support ACP for adults with cancer and their family CGs. Clinical trial information: NCT02367508.
Oncology supportive care clinics as a novel model to integrate oncology and palliative care.
Authors: Kim Yan S , Damle Neha , Greene John D , Baker Jennifer M , Luo Esther J , Escobar Gabriel J 
Published: February 2017

154 Background: The integration of oncology with palliative care (PC) has been endorsed by the American Society of Clinical Oncology. Starting in 2012, Kaiser Permanente Northern California (KPNC) began introducing Oncology Supportive Care Clinics (OSCCs) to better provide integrated oncology and PC services. We evaluated the impact of OSCCs on outpatient PC referrals among patients diagnosed with advanced cancers. Methods: We included all adult patients diagnosed with incidental stage IV cancer from 2010-2014 from 19 medical centers within KPNC. We excluded 2 medical centers for inconsistent PC referral tracking. Patients were required to have continuous KPNC coverage during the study period and were followed for a minimum of 12 months after diagnosis or until death. Outcomes included the rate of PC referral following diagnosis and time elapsed from diagnosis to referral. Because the introduction of OSCCs was staggered by medical center, we used a difference-in-differences model to compare the outcomes in medical centers with and without OSCC, before and after OSCC establishment. Results: OSCCs are currently operational at 11 medical centers. A total of 1,7640 patients were included. At centers with OSCCs, the referral rate after OSCC increased from 16.5% to 30.9% (p < 0.01); compared to no change at centers without OSCCs (12.5% before vs. 11.7% after, p = 0.35). There was a decrease in the median time from diagnosis to PC referral at all medical centers, from 163 days (IQR 33-541) to 75 (IQR 20-255) days, p < 0.01, regardless of OSCC presence. Conclusions: The KPNC OSCC model has been successful at increasing PC referrals in patients with stage IV cancers, highlighting the important role healthcare delivery systems have in driving practice change. More research is ongoing to examine patient-centered outcomes associated with receiving OSCC services.