bluuebunny/crossref_metadata_2025_split huggingface dataset:
A pilot study assessing the burden of caregivers of elderly patients at University College Hospital UCH.
Authors: Omoyeni Eunice Nkechi 
Published: November 2018

12 Background: Caregiver burden is defined as “the perception of stress and fatigue caused by the sustained effort required in caring for persons with chronic illness or other conditions with special needs for care”. It is a type of stress or strain experienced by caregivers, which is directly/ indirectly related to the challenges/problems they face as a result of the health status of the person cared for. Stucki et al. 2000, described the carers burden as “strain or load borne by a person who cares for a chronically ill, disabled, or elderly family member”. Caregiver burden is response to physical, psychological, emotional, social, and financial stressors associated with the caregiving in a multidimensional way. It is the psychosocial and physical reaction to the imbalance of demands placed on the caregiver by various factors, including personal time, multiple roles, physical and emotional states, financial resources, and formal care resources. The caregiver's perception of the burden, rather than the perception of other family members or healthcare providers, determines the impact of this burden on his or her life. Methods: Caregivers of elderly patients attending the geriatric and medical outpatient’s clinics at UCH completed a caregiver strain index scale, over a 2 month period. Demographic information regarding gender, age, were obtained and scaled questions were ticked. Data was analysed using IBM SPSS statistics 21. Results: Eighty-five participants completed the caregiver strain index scale. The socio-demographic data described age and gender. Most participants fell in the 31 - 40 and 41 - 50 age groups (41.2% for each group). Fifty-eight (68.2%) were females while 27 (31.8%) were males. Most common strain variable was demand on time with percentage 54.1% (46). Twenty-nine (34.1%) had moderate level of stress (4 - 6) , while 32 (37.6%) had mild level of stress, and 17 (20.0%) had high level of stress. One participant had the highest score index was 11 while 13 (15.3%) had scores of 3 and 13 (15.3%) had scores of 5. Conclusions: The study showed that caregivers of elderly patients have high burden in the demand on their time and need supportive/collaborative systems which includes palliative care to help with the task of caring for these elderly ones.
Developing a Delphi survey in MD/APP’s for distress level after supportive care inpatient consults.
Authors: Vidal Marieberta 
Published: November 2018

125 Background: Physicians caring for patients with terminal cancer are at particular risk for compromised well-being due to the nature and intensity of the clinical stresses they face. The factors contributing to professional burnout severity included younger age, working in isolation, and working longer hours a shown by a survey conducted by Kamal et al. For patient encounter distress multiple factor have been mention as a source of distress for providers including patient factors, physician factors and environmental factors. No documented evidence of the distress level in palliative care (PC) providers after patient encounter is available. We intend to identify the most common predictors for high distress level after patient encounter in order to identify ways to support our staff. Methods: A group of 28 PC faculty physicians and mid-level providers in the Department of PC at the M. D. Anderson Cancer Center were invited to participate in the study by email with Qualtrics link e-online questionnaire. The questionnaire seek their opinion on the most important interaction or situations that increase their distress level during a PC consult. A 5-point Likert scale of agreement was used, ranging from “strongly disagree” to “strongly agree”. We will conduct the procedure to generate the question prompt sheet with 3 Delphi rounds. Results: After the first round of the Delphi the situations that could cause distress after a consult with more than 80% agreement were identify as: difficult family, manipulative family/patient, angry patient/family, primary team in denial, time of the consult, and number of consults. Situations like patient's terminal diagnosis, patient/family religious beliefs, cultural background, or presence of observer or trainee were less likely consider as source of distress with a less than 20% agreement. Conclusions: For PC specialists situations that affect the communication or rapport with patients as well as amount/burden of clinical work seems to be more a source of distress. Other situations related to uncontrolled symptoms, EOL issues or patient background were less likely a source of distress what could be explain by the expertise of the specialist with these EOL discussions and symptom management.
"Everything that is not curative is now palliative": A nurse perspective.
Authors: Buiting Hilde M. , Botman Femke , Busink Veerle , Oomen Elzbeth , Ho Vincent K.Y. 
Published: November 2018

127 Background: Advances in oncology increasingly result in protracted disease trajectories for patients with incurable cancer. This phase can be described as advanced / metastatic cancer and in which anti-cancer treatment should control symptoms, slow disease progression, and/or prolong life. It poses new challenges for patients and their doctors; it is unknown how and which disease labels are used by nurses. Methods: Qualitative ethnographic study, based on in-depth interviews with 13 oncology nurses at the day-care unit in a Dutch comprehensive cancer hospital. Results: A substantial number of nurses reported not to know whether patients were treated with a curative or palliative intent, and to follow a patient-centred approach. Other nurses clearly demarcated palliative patients, and some distinguished "real palliative patients" from patients with long-standing incurable cancer. When nurses were explicitly asked about medical terminology, many nurses were not very positive about the term "palliative". They considered this to be an old term, e.g. "Now everything that is not curative is palliative". Moreover, the term "palliative" could have an ambiguous/threatening meaning, especially for patients. Whereas nurses often associated the term "palliative" with alleviating symptoms, for patients this term was frequently associated with the approaching death. Most nurses therefore preferred not to use the term "palliative" in front of the patient; but only amongst nurses themselves. Since nurses had not previously been provoked to think about other terms, they were unsure whether "chronic" was the right term. Some indicated that cancer was rather different compared to other chronic diseases, others felt unsure when to use the term "chronic" at all. Conclusions: According to nurses, the use of specific medical terms such as "chronic" to describe the situation of patients in protracted disease trajectories is unclear. Although they acknowledge differences across the palliative care continuum, they refrain from using the word "palliative" in front of the patient. Nurses’ awareness of the disease stage (curative/palliative/ "chronic") might be important to optimise to patients’ specific needs in every disease phase.
Cost of care, discharge disposition, and survival of advanced cancer patients (ACP) receiving early inpatient palliative care (PC) compared to standard oncologic care (SOC) without palliative care.
Authors: Daugherty Christopher , Johnson Julie , Levine Stacie K. , Wroblewski Kristen , Lane Bradford , Dale William , Malec Monica , Hlubocky Fay J. 
Published: November 2018

130 Background: PC significantly enhances ACP quality of life, provides symptom control, improves transitions to end-of-life care, and mortality. However, the financial implications, discharge disposition, and survival benefits of early, inpatient PC compared to SOC remains less understood. Methods: Retrospective cohort analysis of ACP receiving either PC or SOC between Jan 2015-Dec 2015 (N=810). ACP cohorts were compared for demographics, costs, disposition, and survival. Financial costs collected included: fixed (overhead expenditures, facility maintenance, hospital property); variable (patient care supplies, diagnostic/therapeutic supplies, medications); operating (fixed, variable, breaking-even costs); direct (labor, materials, commissions, piece-rate wages, manufacturing supplies); indirect (production supervision salaries, quality control, insurance, depreciation). Univariate and multivariate analyses were completed. Results: 468 were admitted to PC and 342 to SOC. In comparison with SOC, PC were more likely to be: younger (61.1±13.2 vs. 62.5±13.0, p=0.02); African American (48% vs. 36%, p=0.0045); female (50% vs. 40%, p=0.005); and have shorter length of inpatient stay (5.7± 4.9 vs. 6.2±6.5, p=0.01). PC had significantly lower costs: direct ($9,478 vs. $10,416, p=0.01); indirect ($9,538 vs. $10,999, p=0.002); fixed ($10,308 vs. $12,076, p=0.001); variable ($8,709 vs. $ 9,339, p=0.02); operating ($19,017 vs. $21,416, p=0.003).Compared with SOC, ACP receiving PC were more likely to be discharged to: home (55% vs.45%, p=0.01); health care facilities (e.g. skilled nursing, inpatient rehabilitation) (36.1% vs. 20%, p=0.04); and hospice (home and inpatient) (7.7% vs. 5.8%, p=0.02). PC had overall greater median survival from the time of discharge (106.8±99.95 vs. 73.8±61.93, p=0.03) compared to SOC. Conclusions: Early PC results in less financial burden and greater cost savings for inpatient ACP including for those who are younger and underserved. These findings provide further evidence for policies arguing that ACP access to routine PC must become a health care priority.
Next steps: Incorporating patient-reported outcomes into palliative care referral for people with advanced breast cancer.
Authors: Li Yun Rose , Marquez Celine Denise , Rugo Hope S. , Rabow Michael W. , Esserman Laura 
Published: November 2018

133 Background: Specialty palliative care (SPC) has been shown to improve quality of life, reduce unnecessary health care utilization, reduce overall costs, and decrease mortality in some settings for patients with advanced or metastatic cancer, however only a small proportion are being promptly referred. As interventions that respond to patient reported outcomes (PROs) have been shown to improve symptoms and decrease mortality, we hypothesized that the rates of SPC referral would be increased by documenting, tracking, and presenting PROs for oncology visits to referring oncologists. Methods: Over a period of 2 months, 74 English-speaking established patients seen in an advanced breast cancer clinic with an embedded SPC service were approached and completed the study. All patients filled out the electronic, validated PROMIS and PRO-CTCAE PRO questionnaires in the waiting room using a touch screen tablet. Results were presented to the oncologist during the encounter if the CTCAE severity score exceeded 3 in at least 1 domain. Patient demographics, clinical features and PC referrals or appointments were assessed via chart review. Results: At baseline, 9 (12.2%) patients scored a minimum of “severe” (4/5 or 5/5) in at least 1 of the 3 anxiety domains; 17 (23.0%) had moderate-severe pain; and 27 (32.1%) reported fatigue. At study entry, 25 patients (33.8%) had been referred previously to the SPC service; 19 had actually been seen (76% of referred). Of the 63 (85.1%) patients with sufficient follow-up, 13 (20.6%) reported at least “severe” in >1 CTCAE domains, 6 (46.2%) of whom were previously referred to SPC. For the remaining 7 patients, median PROMIS T-score and PRO-CTCAE maximum severity score were 58.3 and 3.2, respectively; none were referred to SPC during the follow up period. Conclusions: The choice to refer (or not to refer) a patient to SPC is complex and tied to patient specific factors such as coordinating additional visits and fear of end of life conversations. To enable greater access to SPC, alternative referral mechanisms, such as group-based or personalized patient education, or automatic referrals triggered by evidence of need, may be required. #YRL/CDM contributed equally.
Disparities in access to palliative care for patients treated for gynecologic oncology.
Authors: Flood Nora , Rivard Colleen 
Published: November 2018

136 Background: Palliative care intends to improve quality of life for patients with life-threatening illness, but ethnic and linguistic minority patients have worse outcomes with palliative care. Methods: This is a single institution retrospective chart review of patients with an advanced stage or recurrent gynecologic malignancy who were seen in the clinic from 2010 to 2015. Women were defined as being from a minority group if they met one of the inclusion criteria including English not the primary language, race other than white, ethnically Hispanic/Latina, or their country of origin was not the United States. We then compared rates of referral to palliative care between those women who were deemed to be minority women as compared to those who were non-minority. We also compared the time to referral between these two groups. Results: Our study included 277 women of which 20% were categorized as minority. Demographic data between the two groups were well matched with the exception that minority women were diagnosed at a younger age and were more likely to have cervical cancer. Although not statistically significant, more minority women were referred to palliative care than non-minority (79% vs. 89%, p=0.08). In contrast, fewer minority patients were referred to palliative care at least 3 months prior to death when compared to non-minority patients (50% vs. 38%, p =0.10). There was no difference between referral location [inpatients (35% vs. 36%) and outpatients (65% vs. 64%, p=.92)] in minority versus non-minority patients. There was also no significant difference in those patients entering hospice while admitted to the hospital. Minority patients had significantly more cancer-related hospitalizations per year (0.6 vs 1.0, p value 0.02). Conclusions: Our study shows that there is a tendency towards later referral to palliative care for minority patients as compared to non-minority patients. Although more minority patients are referred to palliative care, they are hospitalized for cancer related symptoms at a significantly higher rate suggesting that perhaps their utilization of palliative care services is suboptimal.
Quality improvement pilot of a palliative care model in an outpatient community cancer clinic setting.
Authors: De Vos-Schmidt Diane , DiCarlo Brian Anthony , Katics Matt 
Published: November 2018

138 Background: The need for outpatient based palliative care in community cancer clinics has been repeatedly identified, but poorly integrated. Cancer patients benefit from focused attention on the alleviation of symptoms related to either disease or treatment. Methods: A pilot program was developed for use in the outpatient community cancer clinic setting. This program sought to determine feasibility in this setting. It was limited to one medical oncologist and one palliative care APRN. Modifications were made in the electronic medical record to accommodate scheduling, documentation on a palliative care specific progress note and billing. Complete palliative care assessment included: symptom burden assessment, distress analysis using ESAS tool, 10 system physical exam, social, spiritual and emotional history and assessments. Ancillary services of chaplaincy and social services were also available. Home palliative care services were provided by a palliative care accredited home health agency. Initial consult visits were billed 99215, lasting 60 minutes. Follow up visits were billed 99214, lasting 30 min. Family conferences, with the patient present, were billed at the 99215. Results: Sample size was 44 patients: 23% pancreatic cancer, 13% upper gastrointestinal cancers, 13% lung cancer, 11% prostate cancer, 6% each colorectal, ovarian, and hematologic malignancies. The sample size was smaller than anticipated as not all eligible patients were referred. Reports from patients, families, and medical providers were all positive. Conclusions: The program will now be expanded to the entire San Luis Obispo Oncology and Hematology health clinic. This will include five medical oncologist and four advanced practice providers as referral sources. It is anticipated that at least one full time palliative care APRN will be needed. The model was found to be feasible with the additional support of a chaplin, clinic social services, and home health palliative care. The goal is to reduce symptom burden and improve quality of life.
Examining the intersection of palliative care, hospice, and concurrent care in Veterans Affairs (VA).
Authors: Bickel Kathleen Elizabeth , Levy Cari , Corneau Emily , Miller Susan C , Mor Vincent 
Published: November 2018

139 Background: The VA advocates for both palliative care and concurrent care (hospice care and cancer-directed treatment). Studies indicate that these policies have increased hospice use and have improved family-reported outcomes and other quality metrics. However, little is known about how palliative care, hospice care and concurrent care may interact to obtain these outcomes. Methods: This was a retrospective cohort study of veterans dying with stage IV non-small cell lung cancer in 2012. VA and Medicare administrative data were used to identify the cohort, chemotherapy and radiation use, hospitalizations, hospice use and length of stay (LOS). Palliative care use was determined by VA data only. Analyses included descriptive statistics, chi-square and analysis of variance. Results: Of the 1763 veterans, 850 (48.2%) received both palliative care and hospice, 392 (22.2%) received hospice only, 241 (13.7%) received palliative care only and 280 (15.9%) received neither. Receipt of cancer-directed treatment or hospitalization in the last 30 days of life was significantly different across these groups (p < 0.0001) and was highest at 65% (182/280) in the neither palliative care or hospice group. In the remaining groups, rates of cancer-directed treatment or hospitalization in the last 30 days were: 39.4% (95/241) in palliative care only, 29.3% (115/392) in hospice only and 23% (198/850) with both palliative care and hospice. Concurrent care was received by 314 veterans (17.8%), 275 also receiving palliative care. Among veterans receiving palliative care and Medicare hospice, concurrent care did not alter hospice utilization rates or LOS: 36.4% (100/275), LOS mean 22.3, median 16.5, range 1-97 and 37.2% (214/575), LOS mean 20.1, median 13, range 1-94, for concurrent care and non-concurrent care respectively. Conclusions: The rates of cancer-directed treatment or hospitalization in the last 30 days of life appeared to be reduced in a continuum from receipt of neither hospice nor palliative care, to receipt of palliative care or hospice alone, followed by receipt of both together. Concurrent care use was facilitated by palliative care without impacting Medicare hospice use or LOS in palliative care recipients.
Randomized trial protocol of bridge intervention for patients with serious mental illness and cancer.
Authors: Fields Lauren , Callaway Catherine A , Park Elyse R. , Nierenberg Andrew A , Greer Joseph , Temel Jennifer S. , Irwin Kelly 
Published: November 2018

153 Background: Individuals with serious mental illness (SMI) diagnosed with cancer often have disruptions in treatment, leading to premature mortality compared to patients without SMI. To address such gaps in care, we developed and piloted a collaborative care intervention for patients with SMI and cancer (Bridge). We now propose a randomized controlled trial (RCT) to investigate the impact of the Bridge intervention on disruptions in cancer care for patients with SMI. Methods: We will conduct a two-arm RCT (n = 120) comparing Bridge to enhanced usual care (EUC) for patients with SMI (schizophrenia, bipolar disorder, major depressive disorder) and newly diagnosed breast, lung, gastrointestinal, or head/neck cancer. The 12-week Bridge intervention includes: 1) assessment by a psychiatrist with expertise in oncology at cancer diagnosis, 2) involvement of a case manager to promote self-management and care coordination, 3) collaboration between psychiatry and oncology (e.g., joint visits, developing an integrated treatment plan) to address barriers to care, and 4) availability of study clinicians via phone, text, or in-person for consultation and follow-up with patients, caregivers, and oncology and community mental health clinicians. In the EUC arm, study staff will inform the treating oncologist of the psychiatric diagnosis and notify the patient and oncologist of available psychosocial services at enrollment. Patients will be randomized 1:1 to Bridge or EUC, stratified by presence of a caregiver. Identified caregivers will be co-enrolled, and patients without a caregiver will be eligible. We will utilize verbal consent, link study visits to oncology appointments, and personalize frequency and location (e.g., community, clinic, hospital) of contact with patients and caregivers to decrease burden and promote engagement. The primary outcome is the proportion of patients with disruptions in cancer care within 6 months of enrollment, confirmed by oncologists blinded to study arm. Secondary outcomes include clinician assessment of psychiatric illness severity as well as patient and caregiver reported measures (e.g., depression, engagement in care, treatment satisfaction). Results: N/A. Conclusions: N/A. Clinical trial information: NCT03360695.
Comics: Educating and introducing children to radiation therapy.
Authors: Sueyoshi Mark , Olch Arthur , Johns Natalie , Afaga Jordan , Wong Kenneth 
Published: November 2018

155 Background: Comics can address topics in medicine and other facets of life in a format that is widely accessible. Literature suggests that Human-Centered Design strategies can reduce child/caregiver anxiety prior to radiation therapy. Thus, appropriately designed comics can bridge the gap between the practical realities of radiotherapy, like understanding the importance of remaining still in immobilization molds and the pediatric patient's desire for imagination and play. Similar patient-care interventions have been implemented in the form of toys, games, and books. The aim of this project was to draw out best practices in the development of a comic to prepare patients for radiotherapy. Methods: Comic production underwent an iterative process whereby a multidisciplinary team of a radiation oncology department defined a set of principles and goals. An artist then developed several drafts with the input of staff, patients, and family. Readability for the intended audience was assessed by established readability tests. Results: A 25-panel comic draft was produced by the multidisciplinary team that explained in simple terms how radiotherapy is used in a relatable and entertaining way. The dialogue was developed to accommodate the education level of both pediatric patients and caregiver(s) with the intention to be read as a shared experience. The Automated Reliability Index, Flesch Kincaid Grade Level, and Gunning-Fox Index measured readability as fourth, less than sixth, and sixth grade, respectively. The messages included an explanation of radiation, its necessity and likely side effects, the important alliance with the radiation oncology staff, and the central role of the patient. Conclusions: The development of a clear, succinct, and entertaining comic that is relatable to children undergoing radiotherapy is a challenging process, especially in a world awash with competing media. However, a graphic medium can provide an opportunity to convey information and reassurance for both the patient and family. Comics have the potential for greater patient satisfaction over traditional methods of information dissemination. Next steps will involve clinic-wide validation using standardized anxiety and family impact assessment tools.