bluuebunny/crossref_metadata_2025_split huggingface dataset:
Expanding the Palliative Care Domains to Meet the Needs of a Community-Based Supportive Care Model
Authors: Anderson Eric W. , Frazer Monica S. , Schellinger Sandra E. 
Published: November 2017

Background: Whole person care is appropriate for seriously ill persons. The current framework of palliative care domains in the National Consensus Project (NCP) Guidelines for Quality Palliative Care offers an opportunity to reassess the domains of care delivered at home, earlier in the course of illness. Objective: This qualitative study was used to test the applicability of a proposed, expanded set of domains. The results were used to inform a home-based, upstream model of supportive care for serious illness. Methods: Quotes relating to the experience of late-life serious illness were derived from transcripts of 12 semi-structured group interviews conducted with patients, family, and professionals. Quotes originally coded to the NCP domains of palliative care were then coded to the proposed domain set, which included new categories of family/caregiver, legal/financial, and legacy/bereavement domains. Results: A total of 489 quotes were assigned to the proposed expanded set of domains. One hundred one (19%) coded to the family/caregiver domain, 28 (5%) to the legacy/bereavement domain, and 27 (5%) to the legal/financial domain. Ninety-seven (87%) of the 111 quotes coded to family/caregiver had been initially coded to the NCP social aspects of care. Family/caregiver themes included challenges, rewards, insights, and family growth. Conclusion: The preponderance of family-related issues suggests that including the family domain may promote recognition and support of family caregivers and the services they provide. Although this study provides some support for including the legacy/bereavement and legal/financial domains, additional research is needed to determine whether there is a basis for including them in the domain structure.
Factors Associated With End-of-Life Planning in Huntington Disease
Authors: Downing Nancy R. , Goodnight Siera , Chae Sena , Perlmutter Joel S. , McCormack Michael , Hahn Elizabeth , Barton Stacey K. , Carlozzi Noelle 
Published: November 2017

Objective: Knowledge of one’s gene status for adult onset conditions provides opportunity to make advance end-of-life (EOL) plans. The purposes of these analyses were to (1) determine the prevalence of EOL plans, including advance directives (ADs) among persons across 3 stages of Huntington disease (HD) and (2) examine factors associated with having ADs in this sample. Methods: Data are from 503 participants in the HD Quality of Life study. Participants completed an online health-related quality-of-life survey that included questions regarding EOL planning and self-reported HD symptoms. Frequencies were calculated for EOL planning by the HD stage. Bivariate analysis and logistic regression were used to identify variables associated with having ADs. Results: A total of 38.2% of participants stated they had ADs and fewer than half had other EOL plans. Being older, increased HD stage, more years of education, lower anxiety, more swallowing symptoms, and higher meaning and purpose were associated with having ADs. Conclusion: The prevalence of ADs in our sample is comparable to the general US population, but surprisingly low, considering the severity and long disease course of HD. Practice Implications: Health-care providers should develop specific interventions early in the disease process to increase ADs in this population.
Awareness and Misperceptions of Hospice and Palliative Care: A Population-Based Survey Study
Authors: Shalev Ariel , Phongtankuel Veerawat , Kozlov Elissa , Shen Megan Johnson , Adelman Ronald D. , Reid M. C. 
Published: November 2017

Background: Despite the documented benefits of palliative and hospice care on improving patients’ quality of life, these services remain underutilized. Multiple factors limit the utilization of these services, including patients’ and caregivers’ lack of knowledge and misperceptions. Objectives: To examine palliative and hospice care awareness, misperceptions, and receptivity among community-dwelling adults. Design: Cross-sectional study. Subjects: New York State residents ≥18 years old who participated in the 2016 Empire State Poll. Outcomes Measured: Palliative and hospice care awareness, misperceptions, and receptivity. Results: Of the 800 participants, 664 (83%) and 216 (27%) provided a definition of hospice care and palliative care, respectively. Of those who defined hospice care, 399 (60%) associated it with end-of-life care, 89 (13.4%) mentioned it was comfort care, and 35 (5.3%) reported hospice care provides care to patients and families. Of those who defined palliative care (n = 216), 57 (26.4%) mentioned it provided symptom management to patients, 47 (21.9%) stated it was comfort care, and 19 (8.8%) reported it was applicable in any course of an illness. Of those who defined hospice or palliative care, 248 (37.3%) had a misperception about hospice care and 115 (53.2%) had a misperception about palliative care. Conclusions: Most community-dwelling adults did not mention the major components of palliative and hospice care in their definitions, implying a low level of awareness of these services, and misinformation is common among community-dwelling adults. Palliative and hospice care education initiatives are needed to both increase awareness of and reduce misperceptions about these services.
Utilizing the Electronic Health Record to Improve Advance Care Planning: A Systematic Review
Authors: Huber Michael Todd , Highland Janelle Deneen , Krishnamoorthi Venkatesan Ram , Tang Joyce Wing-Yi 
Published: November 2017

Purpose: Advance care planning may ensure care that is concordant with patient wishes. However, advance care plans are frequently absent when needed due to failure to engage patients in planning, inability to access prior documentation, or poor documentation quality. Interventions utilizing tools within the electronic health record (EHR) may address these barriers at the point of care. We aimed to identify EHR interventions previously utilized to improve advance care plans. Methods: We systematically searched 7 databases for observational and experimental studies of EHR interventions associated with advance care plans. We abstracted information on the study populations, EHR and non-EHR components of the interventions, and the efficacy for advance care plan–related outcomes. Results: We identified 16 articles that contained an EHR intervention to improve advance care plans. Study populations, study designs, and EHR components of the interventions were heterogeneous. Documentation templates were the most common EHR tool reported (n = 8), followed by automated prompts (n = 7) and electronic order sets (n = 5). The most common reported outcomes were documentation of an advance care planning conversation in the EHR (n = 7) and the placement of code status orders (n = 7). All studies reporting efficacy (n = 9) demonstrated an improvement in 1 or more advance care planning outcomes. Conclusions: The use of EHR interventions may improve advance care plan completion and availability at the point of care. Further work should seek to develop and evaluate standardized EHR tools for advance care planning.
Delivering End-of-Life Cancer Care: Perspectives of Providers
Authors: Patel Manali I. , Periyakoil Vyjeyanthi S. , Moore David , Nevedal Andrea , Coker Tumaini R. 
Published: November 2017

Objectives: Persistent gaps in end-of-life cancer care delivery and growing associated expenditures remain imminent US public health issues. The objective of this study was to understand clinical providers’ experiences delivering cancer care for patients at the end of life and their perspectives on potential solutions to improve quality of care. Methods: Semistructured interviews were conducted with 75 cancer care providers across the United States. The interviews were recorded, transcribed, and analyzed using constant comparative method of qualitative analysis. Results: Providers identified 3 major cancer care delivery challenges including lack of time to educate patients and caregivers due to clinical volume and administrative burdens, ambiguity in determining both prognosis and timing of palliative care at the end-of-life, and lack of adequate systems to support non-face-to-face communication with patients. To address these challenges, providers endorsed several options for clinical practice redesign in their settings. These include use of a lay health worker to assist in addressing early advance care planning, proactive non-face-to-face communication with patients specifically regarding symptom management, and community and in-home delivery of cancer care services. Discussion: Specific strategies for cancer care redesign endorsed by health-care providers may be used to create interventions that can more efficiently and effectively address gaps in end-of-life cancer care.
Addressing the Challenges of Palliative Care for Homeless Veterans
Authors: Hutt Evelyn , Albright Karen , Dischinger Hannah , Weber Mary , Jones Jacqueline , O’Toole Thomas P. 
Published: November 2017

Background: Veterans who nearing the end of life (EOL) in unstable housing are not adequately served by current palliative care or homeless programs. Methods: Multidisciplinary focus groups, interviews with community and Veterans Affairs (VA) leaders and with 29 homeless veterans were conducted in five cities. A forum of national palliative and homelessness care leaders (n=5) and representatives from each focus group (n=10), then convened. The forum used Nominal Group Process to suggest improvements in EOL care for veterans without homes. Modified Delphi Process was used to consolidate and prioritize recommendations during two subsequent tele-video conferences. Qualitative content analysis drew on meeting transcripts and field notes. Results: The Forum developed 12 recommendations to address the following barriers: (1) Declining health often makes independent living or plans to abstain impossible, but housing programs usually require functional independence and sobriety. (2) Managing symptoms within the homelessness context is challenging. (3) Discontinuities within and between systems restrict care. (4) VA regulations challenge collaboration with community providers. (5) Veterans with unstable housing who are at EOL and those who care for them must compete nationally for prioritization of their care. Conclusion: Care of veterans at EOL without homes may be substantially improved through policy changes to facilitate access to appropriate housing and care; better dissemination of existing policy; cross-discipline and cross-system education; facilitated communication among VA, community, homeless and EOL providers; and pilot testing of VA group homes or palliative care facilities that employ harm reduction strategies.
Young Adults’ Perspectives on Advance Care Planning
Authors: Tripken Jennifer L. , Elrod Cathy S. 
Published: November 2017

Objective: To describe the knowledge, attitudes, beliefs, and behaviors of young adults regarding advance care planning (ACP). Methods: A cross-sectional sample of young adults (N = 310) from a single metropolitan university during September to November 2016 completed an online survey about their knowledge, attitudes, beliefs, and behaviors regarding ACP. Descriptive statistics and correlation tests were conducted. Results: Young adults lacked familiarity and knowledge regarding ACP. Those who were most familiar with ACP terminology were more likely to be older, female, enrolled in a graduate program, and employed full time. Although the majority of respondents had positive attitudes and beliefs about ACP, only one-third had talked with their family/loved ones about their wishes for end-of-life care. Discussion: Our study findings suggest a strong need to inform and engage young adults in ACP and end-of-life care discussions. As young adults are likely to become a caregiver for an aging family member, they can have an important role in initiating and facilitating conversations with loved ones and be instrumental in ACP for older adults.
Patient Reported Outcomes After Radiation Therapy for Bone Metastases as a Function of Age: A Secondary Analysis of the NCIC CTG SC—Twenty-Three Randomized Trial
Authors: Chow Selina , Ding Keyue , Wan Bo Angela , Brundage Michael , Meyer Ralph M. , Nabid Abdenour , Chabot Pierre , Coulombe Genevieve , Ahmed Shahida , Kuk Joda , Dar A. Rashid , Mahmud Aamer , Fairchild Alysa , Wilson Carolyn F. , Wu Jackson S. Y. , Dennis Kristopher , DeAngelis Carlo , Wong Rebecca K. S. , Zhu Liting , Chow Edward 
Published: November 2017

Purpose: To explore the age difference in response and patient-reported outcomes in patients with cancer having bone metastases undergoing palliative radiotherapy. Methods: Patients completed the European Organisation for Research and Treatment of Cancer (EORTC) Quality-of-Life (QOL) Bone Metastases module (QLQ-BM22), EORTC QOL Core-15-Palliative (QLQ-C15-PAL), and Dexamethasone Symptom Questionnaire (DSQ) before a single 8-Gy radiation treatment, on days 10 and 42 after treatment. Patient demographics, performance status, analgesic consumption, BM22, C15, and DSQ were compared with multivariant analysis between patients under 75 years and 75 years and older. Multiple linear regression models were used to assess the differences between age-groups, adjusting for baseline demographics and primary disease sites. Results: There were 298 patients (170 male) with 209 (70%) less than 75 years of age. Most common primary cancer sites include lung, prostate, and breast. At baseline, younger patients had better performance status, consumed more analgesic, and reported worse scores in nausea, insomnia, and functional interference, while older patients more commonly had prostate cancer. There were no significant differences in the incidence of radiation-induced pain flare; response to radiation; changes from baseline for BM22, C15-PAL; and DSQ, nor overall survival at day 42 between the 2 groups. Responders to radiation in the elderly group reported better improvement in physical and emotional domains when compared with nonresponders. Conclusions: In patients with cancer having bone metastases undergoing palliative radiotherapy, there was no significant difference in general with age in response to radiation and patient-reported outcomes. Palliative radiotherapy should be offered to elderly patients when needed.
Educational Intervention to Improve Code Status Discussion Proficiency Among Obstetrics and Gynecology Residents
Authors: Margolis Benjamin , Blinderman Craig , de Meritens Alexandre Buckley , Chatterjee-Paer Sudeshna , Ratan Rini B. , Prigerson Holly G. , Hou June Y. , Burke William M. , Wright Jason D. , Tergas Ana I. 
Published: November 2017

Background: Obstetrics and gynecology (OB/GYN) residents receive little formal training in conducting code status discussions (CSDs). Objective: We piloted an educational intervention to improve resident confidence and competence at conducting CSDs. Design: The OB/GYN residents at a single institution participated in a 3-part educational program. First, participants reviewed a journal article and completed an online module. Second, they received a didactic lecture followed by a resident-to-resident mock CSD. Finally, participants had a videotaped CSD with a standardized patient (SP). Pre- and postintervention surveys and performance evaluations were analyzed. A subgroup analysis was performed on those with completed data sets. Results: Participants included 24 residents in postgraduate years (PGY) 1 to 4: 85% were female with a mean age of 29 years; 83% completed the entrance survey; 63% completed the SP CSD; and 42% completed of all parts of the intervention. Residents initially felt most prepared to discuss treatment options (3.3/5 on a Likert scale) and less prepared to discuss hospice, end-of-life care, and code status (2.2/5, 2.2/5, and 2.3/5, respectively). Performance during the resident-to-resident CSD was variable with scores (% of skills achieved) ranging from 27% to 93% (mean 64%). Performance at the SP encounter was similar with scores ranging from 40% to 73% (mean 56%). After intervention, residents felt more prepared for CSDs (3.7/5) and end-of-life care (3.9/5). The subgroup analysis failed to show a significant change in skill performance from the first to the second CSD. Conclusion: Participants found the components of this intervention helpful and reported improved confidence at conducting CSDs.
Predictors of Placement of Inpatient Palliative Care Consult Orders Among Patients With Breast, Lung, and Colon Cancer in a Safety Net Hospital System
Authors: Smith Lauren N. , Rhodes Ramona L. , Xuan Lei , Halm Ethan A. 
Published: November 2017

Background: The provision of palliative and end-of-life care to patients who are underrepresented and underserved provides unique challenges and opportunities. Objectives: To examine predictors of placement of inpatient palliative care consult orders among patients with breast, lung, and colorectal cancer hospitalized in a safety net hospital in 2010. Methods: Simple and multivariable logistic regression of data on selected patients with cancer was performed to identify predictors of placement of inpatient palliative care consult orders. Results: Of 979 patients, 56% had colorectal cancer, 23% had lung cancer, and 21% had breast cancer. Of those patients, 16% received an order for inpatient palliative care consultation during the study period. Patients who had more than 20 prescriptions for opioids ordered (adjusted odds ratio [AOR]: 9.10, 95% confidence interval [CI]: 4.62-17.95), had an order for a radiation oncology consult (AOR: 2.60, 95% CI: 1.50-4.49), or had low albumin (AOR: 2.75, 95% CI: 4.71) were more likely to have an order for an inpatient palliative care consult placed. Race and ethnicity were not statistically significant predictors. Conclusion: In this cohort of patients in a safety net hospital, markers of pain, advanced disease, and poor prognosis were associated with placement of inpatient palliative care consult orders.
Examining the Role of Primary Care Physicians and Challenges Faced When Their Patients Transition to Home Hospice Care
Authors: Shalev Ariel , Phongtankuel Veerawat , Lampa Katherine , Reid M. C. , Eiss Brian M. , Bhatia Sonica , Adelman Ronald D. 
Published: November 2017

Background: The transition into home hospice care is often a critical time in a patient’s medical care. Studies have shown patients and caregivers desire continuity with their physicians at the end of life (EoL). However, it is unclear what roles primary care physicians (PCPs) play and what challenges they face caring for patients transitioning into home hospice care. Objectives: To understand PCPs’ experiences, challenges, and preferences when their patients transition to home hospice care. Design: Nineteen semi-structured phone interviews with PCPs were conducted. Study data were analyzed using standard qualitative methods. Participants: Participants included PCPs from 3 academic group practices in New York City. Measured: Physician recordings were transcribed and analyzed using content analysis. Results: Most PCPs noted that there was a discrepancy between their actual role and ideal role when their patients transitioned to home hospice care. Primary care physicians expressed a desire to maintain continuity, provide psychosocial support, and collaborate actively with the hospice team. Better establishment of roles, more frequent communication with the hospice team, and use of technology to communicate with patients were mentioned as possible ways to help PCPs achieve their ideal role caring for their patients receiving home hospice care. Conclusions: Primary care physicians expressed varying degrees of involvement during a patient’s transition to home hospice care, but many desired to be more involved in their patient’s care. As with patients, physicians desire to maintain continuity with their patients at the EoL and solutions to improve communication between PCPs, hospice providers, and patients need to be explored.
Asymptomatic spinal cord lesions do not predict the time to disability in patients with early multiple sclerosis
Authors: Dekker Iris , Sombekke Madeleine H , Witte Birgit I , Geurts Jeroen JG , Barkhof Frederik , Uitdehaag Bernard MJ , Killestein Joep , Wattjes Mike P 
Published: November 2017

Background: The presence of asymptomatic spinal cord (SC) lesions in patients with clinically isolated syndrome (CIS) or relapsing-remitting multiple sclerosis (RRMS) predicts conversion to clinically definite multiple sclerosis (CDMS). The relation between asymptomatic SC abnormalities and disability progression warrants further investigation. Objective: To determine the prognostic value of asymptomatic SC lesions in CIS and early RRMS with respect to the time to disability development. Methods: Clinical and demographic data, brain and SC magnetic resonance imaging (MRI) were collected of CIS or early RRMS patients. Two main analyses were performed. For the first analysis, patients were divided into two groups: (1) patients with asymptomatic SC lesions and (2) patients without SC lesions and patients with symptomatic SC lesions. The second analysis excluded patients with symptomatic SC lesions. Incidence curves were used to analyse differences between these groups in time to the development of disability and time to a second relapse. Results: A total of 178 patients were included, and 42 patients (23.6%) had asymptomatic SC lesions. No significant differences were found on the time to disability development or the time to a second event. Conclusion: Asymptomatic SC lesions early in the disease course do not predict the time to disability development in patients diagnosed with CIS or early RRMS.