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biBackground:/i/bDespite substantial palliative care (PC) needs in people with serious illnesses other than cancer, outpatient PC is less available to these populations.biObjectives:/i/bDescribe the experience, impact, and lessons learned from implementing an outpatient PC service (OPCS) for people with noncancer illnesses.biDesign:/i/bObservational cohort study.biSetting/Subjects:/i/bPatients seen by an OPCS at a United States academic medical center October 2, 2017-March 31, 2021.biMeasurements:/i/bPatient demographics and clinical characteristics, care processes, rates of advance care planning (ACP), and health care utilization.biResults:/i/bDuring the study period, 736 patients were seen. Mean age was 66.7 years, 47.7% were women, and 61.4% were White. Nearly half (44.9%) had a neurologic diagnosis, 19.2% pulmonary, and 11.0% cardiovascular. Patients were most often referred for symptoms other than pain (62.2%), ACP (60.2%), and support for patient/family (48.2%). Three-quarters (74.1%) of visits occurred by video. A PC physician, nurse, social worker, and spiritual care provider addressed nonpain symptoms (for 79.2%), family caregiver needs (70.0%), psychosocial distress (69.9%), ACP (68.8%), care coordination (66.8%), pain (38.2%), and spiritual concerns (27.8%). Rates of advance directives increased from 24.6% to 31.8% (ip/i lt; 0.001) and Physician Orders for Life-Sustaining Treatment forms from 15.6% to 27.3% (ip/i lt; 0.001). Of 214 patients who died, 61.7% used hospice, with median hospice length-of-staygt;30 days. Comparing the six months before initiating PC to the six months after, hospitalizations decreased by 31.3% (ip/i = 0.001) and hospital days decreased by 29.8% (ip/i = 0.02).biConclusions:/i/bOutpatient PC for people with noncancer illnesses is feasible, addresses needs in multiple domains, and is associated with increased rates of ACP and decreased health care utilization. Controlled studies are warranted.

Palliative care (PC) benefits critically ill patients but remains underutilized. Important to developing interventions to overcome barriers to PC in the ICU and address PC needs of ICU patients is to understand how, when, and for which patients PC is provided in the ICU.Compare characteristics of specialty PC consultations in the ICU to those on medical-surgical wards.Retrospective analysis of national Palliative Care Quality Network data for hospitalized patients receiving specialty PC consultation January 1, 2013 to December 31, 2019 in ICU or medical-surgical setting. 98 inpatient PC teams in 16 states contributed data. Measures and outcomes included patient characteristics, consultation features, process metrics and patient outcomes. Mixed effects multivariable logistic regression was used to compare ICU and medical-surgical units.Of 102,597 patients 63,082 were in medical-surgical units and 39,515 ICU. ICU patients were younger and more likely to have non-cancer diagnoses (all P0.001). While fewer ICU patients were able to report symptoms, most patients in both groups reported improved symptoms. ICU patients were more likely to have consultation requests for GOC, comfort care, and withdrawal of interventions and less likely for pain and/or symptoms (OR-all P0.001). ICU patients were less often discharged alive.ICU patients receiving PC consultation are more likely to have non-cancer diagnoses and less likely able to communicate. Although symptom management and GOC are standard parts of ICU care, specialty PC in the ICU is often engaged for these issues and results in improved symptoms, suggesting routine interventions and consultation targeting these needs could improve care.

Background and ObjectivesSpecialty palliative care (PC) may benefit patients with dementia by aligning treatment with goals and relieving symptoms. We aimed to compare demographics and processes and outcomes of PC for inpatients with dementia with those with systemic illnesses or cancer.MethodsThis multicenter cohort study included standardized data for hospitalized patients with a primary diagnosis of dementia, systemic illnesses (cardiovascular, pulmonary, hepatic, or renal disease), or cancer among the 98 PC teams submitting data to the Palliative Care Quality Network from 2013 to 2019.ResultsOf 155,356 patients, 4.5% (n = 6,925) had a primary diagnosis of dementia, 32.5% (n = 50,501) systemic illness, and 29.2% (n = 45,386) cancer. Patients with dementia were older (mean 85.5 years, 95% confidence interval [CI] 85.3–85.6) than those with systemic illnesses (mean 73.2, 95% CI 73.0–73.3) or cancer (mean 66.6, 95% CI 66.4–66.7; p < 0.0001). Patients with dementia were more likely to receive a PC consult within 24 hours of admission (52.3% vs systemic illnesses 37.4%; cancer 45.3%; p < 0.0001), more likely to be bed-bound (vs systemic illnesses odds ratio (OR) 2.23, 95% CI 2.09–2.39, p < 0.0001; vs cancer OR 3.45, 95% CI 3.21–3.72, p < 0.0001), and more likely to be discharged alive (vs systemic illnesses OR 2.22, 95% CI 2.03–2.43, p < 0.0001; vs cancer OR 1.51, 95% CI 1.36–1.67, p < 0.0001). Advance care planning/goals of care (GOC) was the primary reason for consultation for all groups. Few patients overall had advance directives or Physician Orders for Life-Sustaining Treatment before consultation. At the time of referral and at discharge, patients with dementia were more likely to have a code status of do not resuscitate/do not intubate (DNR/DNI) (62.6% and 81.0% vs 38.7 and 64.2% for patients with systemic illnesses and 33.4% and 60.5% for patients with cancer; p < 0.0001). Among the minority of patients with dementia that could self-report, moderate-to-severe symptoms were uncommon (pain 6.4%, anxiety 5.8%, nausea 0.4%, and dyspnea 3.5%).DiscussionInpatients with a primary diagnosis of dementia receiving PC consultation were older and more functionally impaired than those with other illnesses. They were more likely to have a code status of DNR/DNI at discharge. Few reported distressing symptoms. These results highlight the need for routine clarification of GOC for patients with dementia.

Background: Patients with cirrhosis have significant morbidity and mortality, as well as substantial symptom burden. Objective: We investigated the relationship between symptom burden and inpatient health care utilization among patients with cirrhosis. Methods: Adult patients with cirrhosis being evaluated for or awaiting liver transplantation at an academic institution in the United States completed the Edmonton Symptom Assessment Scale (ESAS), a validated symptom evaluation tool with total scores ranging from 0 to 90. The outcomes of interest were emergency department (ED) visits, nonelective hospitalizations, hospital days, intensive care unit (ICU) admissions, and 30-day readmissions within 6 months. Adjusted incidence rate ratios (IRRs) were used to examine the relationship between ESAS scores and outcomes. Results: Of 233 patients (43% female, median age 61), the median total ESAS score was 16 (interquartile range 6–30). Higher total scores on the ESAS were associated with increased ED visits, hospitalizations, hospital days, and ICU days (all p

Understanding the unique needs of patients seen in clinic versus at home can help palliative care (PC) teams choose how to maximize available resources.To compare the characteristics and PC needs of patients seen by PC teams in clinic versus at home.We analyzed data from the Palliative Care Quality Network between August 2016 and September 2019 and compared demographics, diagnosis, reason for referral, PC needs, functional status, self-reported symptoms, and patient-reported quality of life.Compared to patients receiving PC in clinic, patients receiving PC at home were more likely to be of age 80 years or older (odds ratio [OR] 7.5, 95% CI 5.0, 10.9, P 0.0001), have lower functional status (mean Palliative Performance Scale score 53% vs. 68%, P 0.0001), and were less likely to screen positive for needing pain management (OR 0.31, 95% CI 0.22, 0.42, P 0.0001) or other symptom management (OR 0.61, 95% CI 0.41, 0.90, P = 0.01). Patients receiving care at home were more likely to be referred for care planning (goals of care discussions or advance care planning) (OR 11.5, 95% CI 8.3, 16.0 P 0.0001) and patient/family support (OR 5.9, 95% CI 4.2, 8.3, P 0.0001).Patients seen by PC teams at home had worse function and were more likely to be referred for care planning, while patients seen in clinic had more PC needs related to pain and symptom management. Despite these differences, both populations have significant PC needs that support routine assessment and require appropriately staffed interdisciplinary teams to address these needs.

OBJECTIVES Although patients with cirrhosis often experience debilitating symptoms, few are referred for palliative care. Frailty is increasingly incorporated in liver transplantation evaluation and has been associated with symptom burden in other populations. We hypothesized that frail patients with cirrhosis are highly symptomatic and thus are likely to benefit from palliative care. METHODS Patients with cirrhosis undergoing outpatient liver transplantation evaluation completed the Liver Frailty Index (grip strength, chair stands and balance) and a composite of validated measures including the Edmonton Symptom Assessment Scale, distress and quality of life (QOL) measures. RESULTS Of 233 patients (median age 61 years, 43% women), 22% were robust, 59% prefrail and 19% frail. Overall, 38% of patients reported ≥1 severe symptoms based on preestablished Edmonton Symptom Assessment Scale criteria. Higher frailty categories were associated with increased prevalence of pain, dyspnea, fatigue, nausea, poor appetite, drowsiness, depression and poor well-being (test for trend, all P < 0.05). Frail patients were also more likely to report psychological distress and poor QOL (all P < 0.01). In univariate analysis, each 0.5 increase in liver frailty index was associated with 44% increased odds of experiencing ≥1 severe symptoms [95% confidence interval (CI), 1.2-1.7, P < 0.001], which persisted (odds ratio, 1.3, 95% CI, 1.0-1.6, P = 0.004) even after adjusting for Model for End Stage Liver Disease-Sodium, ascites, hepatic encephalopathy and age. CONCLUSION In patients with cirrhosis, frailty is strongly associated with physical/psychological symptoms, including pain and depression and poor QOL. Frail patients with cirrhosis may benefit from palliative care co-management to address symptoms and improve QOL.

Purpose: For patients with advanced cancer, palliative care (PC) referral itself results in improved quality of life and lower total health care costs. While our earlier research suggests that PC referral alone does not appear to affect imaging utilization, the effect of the intensity of services for PC symptom management on utilization of imaging services is unknown. We sought to evaluate whether an association exists between the intensity of PC symptom management services and utilization of high-cost imaging at the end-of-life. Methods/Materials: Adult cancer patients who died between January 1, 2012–May 31, 2015 were identified. A PC symptom management intensity score was determined for each patient during the last year of life based upon the number of inpatient and outpatient PC service visits and the number of problems addressed within the 8 defined domains for palliative care. Frequency of utilization of nonemergent oncologic imaging was determined for the last 3 months and the last month of life. Using chi-square and Wilcoxon-rank sum tests, effects of low (th percentile) and high (>80th percentile) PC symptom management intensity score on the proportion of patients imaged and mean number of studies per patient (mean imaging intensity [MII]) were compared for the last 3 months and last month of life. Results: 3,772 decedents were included, with 3,523 (93.4%) never referred to PC and 249 (6.6%) referred to PC, largely before the last month of life (70.3%). Within the last 3 months and last month of life, the proportion of patients imaged was significantly greater (PP>.05). Conclusions: The intensity of PC symptom management in end-of-life oncologic care was not associated with decreased use of nonemergent, high-cost cancer imaging in our cohort. This may suggest an opportunity for reduced high-cost imaging through further clarification of the goals of care with both patients and oncologists, although the role of imaging in the setting of PC during the end-of-life period warrants further study as well.

ObjectiveThis observational study explores the association between palliative care (PC) involvement and high-cost imaging utilisation for patients with cancer patients during the last 3 months of life.MethodsAdult patients with cancer who died between 1 January 2012 and 31 May 2015 were identified. Referral to PC, intensity of PC service use, and non-emergent oncological imaging utilisation were determined. Associations between PC utilisation and proportion of patients imaged and mean number of studies per patient (mean imaging intensity (MII)) were assessed for the last 3 months and the last month of life. Similar analyses were performed for randomly matched case-control pairs (n = 197). Finally, the association between intensity of PC involvement and imaging utilisation was assessed.Results3784 patients were included, with 3523 (93%) never referred to PC and 261 (7%) seen by PC, largely before the last month of life (61%). Similar proportions of patients with and without PC referral were imaged during the last 3 months, while a greater proportion of patients with PC referral were imaged in the last month of life. PC involvement was not associated with significantly different MII during either time frame. In the matched-pairs analysis, a greater proportion of patients previously referred to PC received imaging in the period between the first PC encounter and death, and in the last month of life. MII remained similar between PC and non-PC groups. Finally, intensity of PC services was similar for imaged and non-imaged patients in the final 3 months and 1 month of life. During these time periods, increased PC intensity was not associated with decreased MII.ConclusionsPC involvement in end-of-life oncological care was not associated with decreased use of non-emergent, high-cost imaging. The role of advanced imaging in the PC setting requires further investigation.

Background:Palliative care (PC) is recommended for people with amytrophic lateral sclerosis (ALS), but there is scant literature about how to best provide this care. We describe the structure and impact of a pilot program that integrates longitudinal, interdisciplinary PC into the care of patients with ALS.Methods:Observational cohort study of patients with ALS referred to outpatient PC and seen for at least three PC visits October 2017-July 2020.Results:Fifty-five patients met inclusion criteria. Three-quarters (74.5%) were Caucasian and 78.2% spoke English. Patients were referred for advance care planning (58.2%), support for patient/family (52.7%), and symptoms other than pain (50.9%).Patients had a mean of five scheduled PC visits, the majority occurred by video. A PC physician, nurse, social worker, and chaplain addressed pain (for 43.6% of patients), non-pain symptoms (94.5%), psychosocial distress (78.2%), spiritual concerns (29.1%), care planning (96.4%), and supported family caregivers (96.4%).With PC, the rate of completion of advance directives increased from 16.4% to 36.4% (p=0.001) and Physician Orders for Life-Sustaining Treatment forms from 10.9% to 63.6% (pConclusions:Integrating longitudinal, interdisciplinary PC into the care of patients with ALS is feasible, addresses needs in multiple domains, and is associated with increased rates of advance care planning. Controlled studies are needed to further elucidate the impact of PC on ALS patients, families, and clinicians.

Background: The morbidity and mortality of interstitial lung disease (ILD) is high, despite novel therapeutics. Recognizing unmet needs for symptom management, advance care planning (ACP), and supp...

Context Critically ill patients have important palliative care (PC) needs in the intensive care unit (ICU), but specialty PC is often underutilized. Objective To evaluate changes in utilization and reasons for PC consultation over time. Methods Data from a national multi-site network of inpatient PC visits were used to identify patients age ≥18 years admitted to an ICU between 2013 and 2019. Year of ICU admission was the exposure. Primary diagnosis and reason for referral were identified by standardized process measures within the dataset at the time of referral. Trends in primary diagnosis and reason for referral were modeled as a function of year of ICU admission. Results Across 39,515 ICU patients seen by a PC team, overall numbers of consultations from the ICU increased each year. Referrals for patients with cancer decreased from 17.6% (95% CI 13.7%–21.5%) to 14.3% (95% CI 13.2%–14.7%) and for patients with cardiovascular disease increased from 16.8% in (95% CI 16.8%–16.9%) to 18.8% (95% CI 18.8%–18.9%). Reasons for referrals were primarily for goals of care and advance care planning and increased from 74.0% (95% CI 70.0%–78.0%) in 2013 to 80.0% (95% CI 79.4%–80.0%) in 2019 (P Conclusion PC referrals in ICU patients with cancer are decreasing, while those for cardiovascular disease are increasing. Reasons for referrals in the ICU are commonly for goals of care; other reasons, like pain control are uncommon. Early goals of care conversations and further training in advance care planning should be emphasized in the ICU setting.

Background: Telemedicine visits reduce the physical and financial burdens associated with in-person appointments, especially for patients with serious illness. Little is known about patient and caregiver preferences regarding telemedicine visit timing and the discussion of sensitive topics by telemedicine. Objective: To characterize the experience of patients with serious illness and their caregivers receiving palliative care (PC) by telemedicine. Design: Mixed-methods telephone survey. Setting/Subjects: Patients and family caregivers who had at least one telemedicine visit with the outpatient PC team at our urban academic medical center. Results: A total of 35 patients and 15 caregivers were surveyed. Patient mean age was 61 years, 49% had cancer, and 86% were Caucasian. Caregiver mean age was 62 years. Mean satisfaction with PC telemedicine visits was 8.9 out of 10 for patients; 8.8 for caregivers. Patients (97%) and caregivers (100%) felt comfortable discussing sensitive topics over video. Participants felt telemedicine was an acceptable format to discuss most sensitive topics but 53% of caregivers preferred to receive bad news in person. Participants valued the convenience of telemedicine; they had concerns about rapport building and desired a more user-friendly telemedicine platform. Conclusions: Patients with serious illness and their caregivers rated telemedicine visits highly and felt comfortable discussing sensitive topics by video. Concerns included rapport building and telemedicine platform setup and quality. The rapid growth of telemedicine during coronavirus disease 2019 creates an imperative for research to understand the impact on the quality of care and mitigate any negative effects of telemedicine within a diverse population of patients.

Background: While studying the etiology of multiple sclerosis (MS) in children has several methodological advantages over studying etiology in adults, studies are limited by small sample sizes. Objective: Using a rigorous methodological process, we developed the Pediatric MS Tool-Kit, a measurement framework that includes a minimal set of core variables to assess etiological risk factors. Methods: We solicited input from the International Pediatric MS Study Group to select three risk factors: environmental tobacco smoke (ETS) exposure, sun exposure, and vitamin D intake. To develop the Tool-Kit, we used a Delphi study involving a working group of epidemiologists, neurologists, and content experts from North America and Europe. Results: The Tool-Kit includes six core variables to measure ETS, six to measure sun exposure, and six to measure vitamin D intake. The Tool-Kit can be accessed online ( www.maelstrom-research.org/mica/network/tool-kit ). Conclusion: The goals of the Tool-Kit are to enhance exposure measurement in newly designed pediatric MS studies and comparability of results across studies, and in the longer term to facilitate harmonization of studies, a methodological approach that can be used to circumvent issues of small sample sizes. We believe the Tool-Kit will prove to be a valuable resource to guide pediatric MS researchers in developing study-specific questionnaire

Key Points Question How do hospitalized patients with heart failure who are referred to palliative care differ from patients with cancer in their characteristics, reasons for referral, and outcomes of referral? Findings In this cohort study of 57 272 adults, patients with heart failure were referred for palliative care later in their disease course than patients with cancer. Fewer patients with heart failure were referred for symptom management but they had similar rates of symptom improvement after referral. Meaning Hospitalized patients with heart failure are being referred later to palliative care, suggesting that there are opportunities to integrate palliative care earlier in the disease trajectory for symptom management., This cohort study evaluates the processes and outcomes of palliative care consultations for hospitalized patients with heart failure compared with patients with cancer at community and academic hospitals included in the Palliative Care Quality Network., Importance Growing evidence shows that palliative care (PC) improves treatment outcomes in patients with heart failure (HF), but few large-scale studies have prospectively evaluated the processes and outcomes associated with PC consultation for such patients in the real world. Objective To characterize processes and outcomes of PC consultations for hospitalized patients with HF compared with patients with cancer. Design, Setting, and Participants This cohort study of inpatient encounters at community and academic hospitals in the Palliative Care Quality Network enrolled participants between 2013 and 2017. Of a total of 135 197 patients, 57 272 adults with a primary diagnosis of HF or cancer receiving PC consultation were enrolled. Data analysis was performed from April 2018 to December 2019. Exposures Primary diagnosis of HF or cancer. Main Outcomes and Measures Symptom improvement and changes in care planning documentation after PC consultation. Results At the time of consultation, patients with HF were older (mean age, 75.3 years [95% CI, 75.0-75.5 years] vs 65.2 years [95% CI, 65.0-65.3 years]; P

Pain is a common and distressing symptom. Pain management is a core competency for palliative care (PC) teams.Identify characteristics associated with pain and pain improvement among inpatients referred to PC.Thirty-eight inpatient PC teams in the Palliative Care Quality Network entered data about patients seen between December 12, 2012 and March 15, 2016. We examined patient and care characteristics associated with pain and pain improvement.Of patients who could self-report symptoms, 30.7% (4959 of 16,158) reported moderate-to-severe pain at first assessment. Over 40% of these patients had not been referred to PC for pain. Younger patients (P 0.0001), women (P 0.0001), patients with cancer (P 0.0001), and patients in medical/surgical units (P 0.0001) were more likely to report pain. Patients with pain had higher rates of anxiety (P 0.0001), nausea (P 0.0001), and dyspnea (P 0.0001). Sixty-eight percent of patients with moderate-to-severe pain improved by the PC team's second assessment within 72 hours; 74.7% improved by final assessment. There was a significant variation in the rate of pain improvement between PC teams (P 0.0001). Improvement in pain was associated with improvement in anxiety (OR = 2.9, P 0.0001) and dyspnea (OR = 1.4, P = 0.03). Patients who reported an improvement in pain had shorter hospital length-of-stay by two days (P = 0.003).Pain is common among inpatients referred to PC. Three-quarters of patients with pain improve and improvement in pain is associated with other symptom improvement. Standardized, multisite data collection can identify PC patients likely to have marked and refractory pain, create benchmarks for the field, and identify best practices to inform quality improvement.

Describe the establishment of the palliative care quality network (PCQN) with guidance on how teams can develop similar collaborations.In the current healthcare environment, palliative care (PC) teams must be able to demonstrate value and provide efficient care while supporting the clinicians who provide that care.The PCQN is a national quality improvement (QI) collaborative comprised of specialty PC teams from a diverse range of hospitals across the United States Results: PCQN members identified five core activities to support PC teams. 1) Collection of standardized data: 23 core items and 22 optional data elements document patient demographics, consultation characteristics, processes of care, and clinical outcomes. 2) Data analyses with benchmarking including reports generated in real time providing summary, trend, member comparison, and cross-tab analyses. 3) QI collaborative; QI initiatives have addressed pain management, surrogate decision-making, spiritual screening, and anxiety assessment. 4) Education and personal development provided through monthly conference calls, a listserv, PCQN website, and twice-yearly conferences. 5) Financial analysis; a software program enables PC teams to calculate the financial impact of the care provided.The central tenet of the PCQN is to improve quality of care for patients with serious illness and their families, increase the efficient use of healthcare resources, and support growth and sustainability of PC programs. Building and tending to this community takes time to ensure engagement of all members and remain responsive to evolving needs of patients, families, PC teams, and stakeholders.

Palliative care is recommended for patients with metastatic cancer, but there has been limited research about embedded palliative care for specific patient populations. We describe the impact of a pilot program that provided routine, early, integrated palliative care to patients with metastatic colorectal cancer. Mixed methods pre-post intervention cohort study at an academic cancer center. Thirty control then 30 intervention patients with metastatic colorectal cancer were surveyed at baseline and 1, 3, 6, 9, and 12 months thereafter about symptoms, quality-of-life, and likelihood of cure. We compared survey responses, trends over time, rates of advance care planning, and healthcare utilization between groups. Patients, family caregivers, and clinicians were interviewed. Patients in the intervention group were followed for an average of 6.5 months and had an average of 3.5 palliative care visits. At baseline, symptoms were mild (average 1.85/10) and 78.2% of patients reported good/excellent quality-of-life. Half (50.9%) believed they were likely to be cured of cancer. Over time, symptoms and quality-of-life metrics remained similar between groups, however intervention patients were more realistic about their likelihood of cure (p = 0.008). Intervention patients were more likely to have a surrogate documented (83.3% vs. 26.7%, p

This cohort study characterizes current practice and trends among patients cared for and outcomes achieved by inpatient specialty palliative care services in the United States., Key Points Question How have the practice and outcomes of inpatient, specialty palliative care in the United States changed over time? Findings During the 5 years examined in this cohort study of 135 197 patients, palliative care teams saw an increasing percentage of patients with diagnoses other than cancer, saw an increasing percentage of patients discharged from the hospital alive, and connected more patients with outpatient supportive services. Meaning These trends suggest that inpatient palliative care teams are reaching a broader group of patients with serious illness and are seeing them earlier in their illnesses, consistent with emerging data and guidelines., Importance Although palliative care (PC) historically focused on patients with cancer and those near the end of life, evidence increasingly demonstrates a benefit to patients with a broad range of serious illnesses and to those earlier in their illness. The field of PC has expanded and evolved rapidly, resulting in a need to characterize practice over time to understand whether it reflects evolving evidence and guidelines. Objective To characterize current practice and trends among patients cared for and outcomes achieved by inpatient specialty PC services in the United States. Design, Setting, and Participants This retrospective cohort study was performed from January 1, 2013, to December 31, 2017, at 88 US hospitals in which PC teams voluntarily participate in the Palliative Care Quality Network (PCQN), a national quality improvement collaborative. A total of 135 197 patients were referred to PCQN teams during the study period. Initial analyses of the study data were conducted from March 3 to March 21, 2018. Exposure Inpatient PC consultation. Main Outcomes and Measures A total of 23 standardized data elements collected by PCQN teams that provided information about the characteristics of referred patients, including age, sex, Palliative Performance Scale score, and primary diagnosis leading to PC consult; reason(s) given for the consultation; and processes of care provided by the PC team, including disciplines involved, number of family meetings held, advance care planning documentation completed, and screened for and intervened on needs. Results A total of 135 197 patients were referred to inpatient PC (51.0% female; mean age, 71.3 years [range, 57.8-82.5 years]) and were significantly debilitated (mean Palliative Performance Scale score, 34.7%; range, 14.9%-56.8%). Cancer was the most common primary diagnosis (32.0%; range, 11.3%-93.9%), although rates decreased from 2013 to 2017 (odds ratio [OR], 0.84; 95% CI, 0.79-0.91; P

ContextAlthough palliative care (PC) has been shown to improve symptoms and end-of-life (EOL) care for patients with cancer, data are lacking on the patterns of use and outcomes of PC consultations for hospitalized patients with liver disease.ObjectivesWe sought to characterize the patterns of use and outcomes of PC consultations for hospitalized patients with liver disease compared with patients with cancer.MethodsWe conducted an observational study using data from the Palliative Care Quality Network (PCQN). The PCQN contains prospectively collected data on 135,197 hospitalized patients receiving PC consultations at 88 PCQN sites between January 2013 and December 2017. The PCQN data set includes patient demographics, processes of care, and patient-level clinical outcomes.ResultsThe cohort included 44,933 patients, of whom 4402 (9.8%) had liver disease and 40,531 (90.2%) had cancer. Patients with liver disease were younger (58.9years vs. 65.2years, P&nbsp

Background: People with heart failure (HF) have high morbidity and mortality and may benefit from palliative care (PC). Objective: To pilot a randomized, clinical trial of a PC interventio...

The objective of this study is to describe preferences of patients with heart failure (HF) for having advance care planning (ACP) discussions with clinicians and to identify characteristics associated with those preferences.National guidelines call for having ACP discussions with patients with serious illnesses such as HF. Many patients with HF do not discuss ACP with their physician despite wanting to have them.We conducted a cross-sectional cohort study between July 2007 and November 2009 within HF clinics affiliated with a large, urban, academic medical center. Patients with New York Heart Association HF classes II and III were surveyed about whether they had or would like to have discussions with their clinician about what to expect in the future regarding their HF, prognosis, ACP, and their surrogate choice.Patients (n = 104) were on average 53 years old (standard deviation = 14.3; range: 21-84) and had Class II (57%) or Class III (43%) HF. Most patients had discussed what to expect in the future regarding HF (76.5%, 78/102), prognosis (68.0%, 68/100), surrogate choice (90.3%, 93/103), and ACP (46.5%, 47/101). Most of those who did not have these discussions would have liked to discuss expectations regarding their HF (87.5%, 21/24), prognosis (80.6%, 25/31), and ACP (59.6%, 31/52). Men were more likely than women to report having had discussions about their HF (83.6% vs. 62.9%; p = 0.02), prognosis (78.5% vs. 48.6%; p = 0.002), and ACP (56.1% vs. 28.6%; p = 0.01). On average younger patients were more likely to report having discussed what to expect regarding their HF (50 years vs. 59 years; p = 0.007), and to be asked about their spirituality (43 years vs. 56 years; p = 0.0001).Conforming to national guidelines, most patients with HF have discussed ACP with clinicians and most of those who have not, want to. Findings should embolden clinicians to routinely discuss ACP.

Describe the etiology of pain among HF patients and examine the relationship between pain and QoL.Little is known about the etiology of pain in patients with heart failure (HF) and the impact it has on quality of life (QoL).A prospective cohort study of outpatients with NYHA Class II or III HF were surveyed at baseline and at three-month follow-up. The study was conducted in Heart Failure clinics affiliated with a large, urban, academic medical center.Of 104 patients that completed a baseline survey, 73 (70%) completed a follow-up survey. At baseline, 48% of patients reported having pain the previous week. Patients on prescription pain medication (n = 16) had more severe pain (Mean = 4.5 vs. 2.6; p = 0.001). Physician documented pain etiologies included: musculoskeletal (50%, n = 16), cardiac (22%, n = 7), and headache/neurological (22%, n = 7). Linear regression revealed that significant contributions to QoL included HF Class (p = 0.0001), dyspnea (p = 0.0001), and depression (p = 0.01). Pain was not independently associated with QoL (p = 0.17), but moderately correlated with depression (r = 0.49). Although 15% (n = 11) of patients reported a clinically meaningful improvement in pain scores, it was not associated with improvements in QoL (χPain is prevalent and persistent, due largely to non-cardiac causes. Although pain did not predict QOL, it was associated with depression, which did adversely affect QoL. Clinicians should screen for and treat both symptoms.

ObjectivesTo compare characteristics and needs of inpatients with neurologic disease to those with cancer referred for palliative care (PC) consultation.MethodsThis prospective cohort study used data collected by the Palliative Care Quality Network from January 2013 until December 2016. We compared demographics, reasons for consultation, discharge disposition, Palliative Performance Scale (PPS) score, and outcomes of care among patients with a primary diagnosis of neurologic disease vs cancer.ResultsThe most common reason for PC consultation in all patients was assistance with goals of care and advanced care planning. PC consultation was less often requested for pain and symptom management in patients with neurologic disease compared to patients with cancer (13.7% vs 43%, odds ratio 0.3) and more often for assistance with transition to comfort measures only and withdrawal of life-sustaining treatment (19.1% vs 7.1%, odds ratio 1.3). Patients with cancer had higher PPS scores (42.1% vs 23.4%) and were more likely to be discharged home from the hospital, while patients with neurologic disease were more likely to die in hospital.ConclusionsPatients with neurologic disease as a reason for PC consultation are more in need of end-of-life care planning and more likely to die in the hospital than those with cancer, suggesting that targeted approaches may best address the needs of each patient population. Our results can direct further research and education in neuropalliative care.

Care planning is a critical function of palliative care teams, but the impact of advance care planning and goals of care discussions by palliative care teams has not been well characterized.To describe the population of patients referred to inpatient palliative care consultation teams for care planning, the needs identified by palliative care clinicians, the care planning activities that occur, and the results of these activities.This was a prospective cohort study conducted between January 1, 2013, and December 31, 2016. Seventy-eight inpatient palliative care teams from diverse US hospitals in the Palliative Care Quality Network, a national quality improvement collaborative. Standardized data were submitted for 73 145 patients.Inpatient palliative care consultation.Overall, 52 571 of 73 145 patients (71.9%) referred to inpatient palliative care were referred for care planning (range among teams, 27.5%-99.4% of patients). Patients referred for care planning were older (73.3 vs 67.9 years; F statistic, 1546.0; P .001), less likely to have cancer (30.0% vs 41.1%; P .001), and slightly more often had a clinical order of full code at the time of referral (54.6% vs 52.1%; P .001). Palliative care teams identified care planning needs in 52 825 of 73 145 patients (72.2%) overall, including 42 467 of 49 713 patients (85.4%) referred for care planning and in 10 054 of 17 475 patients (57.5%) referred for other reasons. Through care planning conversations, surrogates were identified for 10 571 of 11 149 patients (94.8%) and 9026 patients (37.4%) elected to change their code status. Substantially more patients indicated that a status of do not resuscitate/do not intubate was consistent with their goals (7006 [32.1%] preconsultation to 13 773 [63.1%] postconsultation). However, an advance directive was completed for just 2160 of 67 955 patients (3.2%) and a Physicians Orders for Life-Sustaining Treatment form was completed for 8359 of 67 955 patients (12.3%) seen by palliative care teams.Care planning was the most common reason for inpatient palliative care consultation, and care planning needs were often found even when the consultation was for other reasons. Surrogates were consistently identified, and patients' preferences regarding life-sustaining treatments were frequently updated. However, a minority of patients completed legal forms to document their care preferences, highlighting an area in need of improvement.

BACKGROUND Integrating palliative care into intensive care units (ICUs) requires involvement of bedside nurses, who report inadequate education in palliative care. OBJECTIVE To implement and evaluate a palliative care professional development program for ICU bedside nurses. METHODS From May 2013 to January 2015, palliative care advanced practice nurses and nurse educators in 5 academic medical centers completed a 3-day train-the-trainer program followed by 2 years of mentoring to implement the initiative. The program consisted of 8-hour communication workshops for bedside nurses and structured rounds in ICUs, where nurse leaders coached bedside nurses in identifying and addressing palliative care needs. Primary outcomes were nurses' ratings of their palliative care communication skills in surveys, and nurses' identification of palliative care needs during coaching rounds. RESULTS Each center held at least 6 workshops, training 428 bedside nurses. Nurses rated their skill level higher after the workshop for 15 tasks (eg, responding to family distress, ensuring families understand information in family meetings, all P < .01 vs preworkshop). Coaching rounds in each ICU took a mean of 3 hours per month. For 82% of 1110 patients discussed in rounds, bedside nurses identified palliative care needs and created plans to address them. CONCLUSIONS Communication skills training workshops increased nurses' ratings of their palliative care communication skills. Coaching rounds supported nurses in identifying and addressing palliative care needs.

The number of palliative care consultation services is growing, yet little is known about how program characteristics change over time.Compare changes in the characteristics of palliative care programs and palliative care consultation services in 2007 and 2011.We surveyed all hospitals in California in 2011 and compared palliative care program and palliative care consultation service characteristics with survey results from 2007.There were 41 new palliative care programs since 2007; 17 programs closed between 2007 and 2011. Hospital characteristics associated with the closure of a palliative care program included a hospital size of 1-149 beds versus 150 or more (p=0.03), for-profit status (p=0.001), and having no system affiliation (p=0.0001). The prevalence of palliative care consultation services was 33% in 2007 and 37% in 2011 (p=0.3). At both time periods nearly all palliative care consultation services (98%) were available onsite during weekday business hours and only half were available at other times (p=0.4). There was an increase (p=0.002) in nurse/physician full-time equivalent (FTE; 2007, mean=1.5; 95% confidence interval [CI]=1.3-1.7; 2011, mean=1.9; 95% CI=1.6-2.2) but fewer teams reported having social workers (58% versus 80%, p=0.002) and chaplains (58% versus 77%, p=0.0001) in 2011. Over half of the palliative care consultation services reported seeing less than 50% of patients who would benefit from a consultation (2007: 59%, 2011=50%, p=0.2), yet most also reported struggling to cope with patient volume (2007: 62%; 2011: 66%, p=0.5).Fewer than half of hospitals in California offer a palliative care program and many close over time. Making palliative care consultation services a condition of participation by insurers could make hospital palliative care consultation services universal. Mechanisms need to be established to improve staffing levels, maintain the interdisciplinary nature of palliative care consultation services, and accommodate demand for services.

Context Benzodiazepines (BZDs) are commonly prescribed for relief of dyspnea in palliative care, yet few data describe their efficacy. Objectives To describe the management of moderate-to-severe dyspnea in palliative care patients. Methods Chart review of inpatients with moderate or severe dyspnea on initial evaluation by a palliative care service. We recorded dyspnea scores at follow-up (24 hours later) and use of BZDs and opioids. Results The records of 115 patients were reviewed. The mean age of patients was 64 years and primary diagnoses included cancer (64%, n=73), heart failure (8%, n=9), and chronic obstructive pulmonary disease (5%, n=6). At initial assessment, 73% (n=84) of the patients had moderate and 27% (n=31) had severe dyspnea. At follow-up, 74% (n=85) of patients reported an improvement in their dyspnea, of which 42% (n=36) had received opioids alone, 37% (n=31) had BZDs concurrent with opioids, 2% (n=2) had BZDs alone, and 19% (n=16) had received neither opioids nor BZDs. Logistic regression analysis identified that patients who received BZDs and opioids had increased odds of improved dyspnea (odds ratio 5.5, 95% CI 1.4, 21.3) compared with those receiving no medications. Conclusion Most patients reported improvement in dyspnea at 24 hours after palliative care service consultation. Consistent with existing evidence, most patients with dyspnea received opioids but only the combination of opioids and BZDs was independently associated with improvement in dyspnea. Further research on the role of BZDs alone and in combination with opioids may lead to better treatments for this distressing symptom.

Background/aimPalliative care services (PCS) are recommended to enhance quality of care for hospitalized patients.MethodsWe evaluated the attitudes of liver transplant (LT) providers and perceived barriers to PCS for their patients by conducting a web-based survey of intensive care unit nurses, postgraduate year 1 (PGY1) physician trainees, nurse practitioners, fellows, and attending physicians on the LT service at an academic medical center.ResultsThe response rate was 44% (88/200). Providers agreed that LT and PCS are not mutually exclusive (86%, n = 76). Respondents reported confusion regarding criteria and timing for referral to PCS. Most suggested that referral is appropriate when death is imminent (78%, n = 69). Many providers felt that patients' depression (66%, n = 58) was poorly managed, although few identified that PCS were consulted for depression (28%, n = 25). Overall, 84% (n = 74) identified attending physicians as the main barrier to involving PCS, and attendings (93%, n = 82) were more likely than PGY1 (67%, n = 59) and nurses (55%, n = 48) to describe PCS as end-of-life care (p = 0.03). Nearly all LT providers agreed that patients welcomed goals of care discussions (83%, n = 73), were grateful for PCS (96%, n = 85), and received higher quality care with PCS (96%, n = 85).ConclusionLT providers overwhelmingly report that PCS benefit patients and are consistent with LT goals even while patients are listed for LT. Barriers to PCS include confusion over referral criteria and describing PCS as end-of-life care by attending physicians. PCS teams may expand access for LT patients by establishing clear criteria for PCS referral and targeting educational interventions about palliative care to attendings.

The objective of this cross-sectional questionnaire study was to assess associations of a self-report index of sun protection habit strength with sunscreen use in sporting environments and outdoor physical activity. Participants (n = 234) in field hockey, soccer, tennis and surf sports in Queensland, Australia, completed a self-administered survey on sun protection during organized sport, and during general outdoor physical activity during 2005/2006. The sun protection habit strength index was dichotomized into two categories. Multinomial logistic regression analyses assessed the associations of low versus high sun protection habit strength with three categories of sunscreen use (no or rare use; inadequate use; and adequate use). Compared to participants with low sun protection habit strength, those with high sun protection habit strength had significantly greater odds of any sunscreen use during organized sport and during general outdoor physical activity. This association was strongest for adequate sunscreen use in both settings. In conclusion, this study suggests that the measure of sun protection habit strength is a potentially useful assessment tool for future sun protection studies.

Background Few studies have reported the accuracy of measures used to assess sun-protection practices. Valid measures are critical to the internal validity and use of skin cancer control research. Objectives We sought to validate self-reported covering-up practices of pool-goers. Methods A total of 162 lifeguards and 201 parent/child pairs from 16 pools in 4 metropolitan regions in the United States completed a survey and a 4-day sun-habits diary. Observations of sun-protective behaviors were conducted on two occasions. Results Agreement between observations and diaries ranged from slight to substantial, with most values in the fair to moderate range. Highest agreement was observed for parent hat use (κ = 0.58-0.70). There was no systematic pattern of over- or under-reporting among the 3 study groups. Limitations Potential reactivity and a relatively affluent sample are limitations. Conclusion There was little over-reporting and no systematic bias, which increases confidence in reliance on verbal reports of these behaviors in surveys and intervention research.

Outdoor recreation settings, such as swimming pools, provide a promising venue to assess UVR exposure and sun protection practices among individuals who are minimally clothed and exposed to potentially high levels of UVR. Most studies assessing sun exposure/protection practices rely on self-reported data, which are subject to bias. The aim of this study was to establish the feasibility of conducting a multimethod study to examine the validity of self-reported measures within a swimming pool setting. Data were collected from 27 lifeguards, children and parents in Hawaii. Each participant filled out a survey and a 4 day sun habits diary. On two occasions, researchers assessed observable sun protection behaviors (wearing hats, shirts, sunglasses), swabbed the skin to detect the presence of sunscreen, and subjects wore polysulphone dosimeters to measure UVR exposure. Overall, observed sun protection behaviors were more highly correlated with diary reports than with survey reports. While lifeguards and children reported spending comparable amounts of time in the sun, dosimeter measures showed that lifeguards received twice as much UVR exposure. This study demonstrated the feasibility of implementing a multimethod validity study within a broader population of swimming pools.

Background: Skin cancer is the most prevalent form of cancer in the United States and is rising rapidly; however, most skin cancers are preventable. Compared to self-report, direct observational methodologies could be a more valid and reliable tool for assessing sun protective behaviors within a specific environment.Purpose: The aim of the study is to assess the sun protection practices of beachgoers using a reliable observational measure.Methods: A systematic observation system for assessing sun protective behaviors among beachgoers was developed. Data were collected by 2 raters over 3 days using momentary ecological sampling methods. Individuals in a representative zone were assessed for head wear, upper body wear, sunglasses use, shade use, and gender.Results: Over the 3 days, Observers A and B made 1,678 and 1,725 observations, respectively. Interrater reliability ranged from 0.77 to 0.99. Hats, sunglasses, shirts, and shade were all used by less than 30% of the population. Sun protection behaviors varied by time of day and cloud cover.Conclusions: A reliable, observational measure designed to assess population behavior at the setting level showed low use of sun protection practices among beachgoers. Test-retest reliability, the inclusion of low body protection, coding for age, and skin tone are recommended for future versions of this system.

BackgroundThe measurement and reporting of the quality of care in the field of palliation has become a required task for many health care leaders and specialists in palliative care. Such efforts are aided when organizations collaborate together to share lessons learned.MethodsThe authors reviewed examples of quality-improvement collaborations in palliative care to understand the similarities, differences, and future directions of quality measurement and improvement strategies in the discipline.ResultsThree examples were identified that showed areas of robust and growing quality-improvement collaboration in the field of palliative care: the Global Palliative Care Quality Alliance, Palliative Care Quality Network, and Project Educate, Nurture, Advise, Before Life Ends. These efforts exemplify how shared-improvement activities can inform improved practice for organizations participating in collaboration.ConclusionsNational and regional collaboratives can be used to enhance the quality of palliative care and are important efforts to standardize and improve the delivery of palliative care for persons with serious illness, along with their friends, family, and caregivers.

To examine the association between tanning bed use and weight concerns, health risk behaviors, and peer influence. The Growing Up Today Study (GUTS) is an ongoing prospective cohort study of adolescents established in 1996. In 1999, a total of 6,373 adolescent females ages 12–18 (offspring of participants in the Nurses Health Study 2) completed the survey. Almost nine percent (8.6%) of the adolescent girls had used a tanning bed 1–9 times and an additional 5.4% had used tanning beds at least 10 times in the past year (frequent users). Logistic regression models revealed that frequent tanning bed use was associated with being highly concerned about weight (OR = 1.5, 95%CI = 1.1, 2.0), frequently dieting to lose weight (OR = 1.5, 95%CI = 1.1, 2.0), using laxatives or vomiting to control weight (OR = 3.6; 95%CI = 2.2–5.8), having friends who placed a lot of importance on being thin (OR = 2.6; 95%CI = 1.3–5.1), smoking cigarettes (OR=1.7, 95%CI = 1.1, 2.6), binge drinking (OR = 2.1, 95%CI = 1.3, 3.1), using recreational drugs (OR = 3.0; 95%CI = 2.4, 3.8), and trying to look like females in the media (sometimes/pretty much: OR = 1.3, 95%CI = 1.0, 1.8). Frequent tanning bed use among adolescent females is associated with a range of health risk behaviors. This effect may be mediated by peer influence and a desire to look like other females in the media. Multi-pronged approaches, particularly those that target attitudes of young females, are needed to combat increased use of tanning beds.

Purpose. We assessed the placement of magazine advertising for sun care products to lay the groundwork for broader promotion to more diverse and high-risk demographic groups. Methods. We reviewed 579 issues of 24 magazines published between the months of May and September from 1997 to 2002. We conducted a cover-to-cover review of top-selling magazines for men, women, teens, parents, travelers, and outdoor recreation users. We determined if there were any advertisements for the following sun care products: sun tanning lotions containing sun protection factor (SPF), sunless tanners without SPF, sunscreen with SPF, moisturizers with SPF, or cosmetics with SPF (which include sunless tanners containing SPF). Results. Sun care products, including sunscreens, were advertised primarily in women's magazines (77%). Nearly two thirds of all sun care products advertised were either for cosmetics (38%) or moisturizers (26%) containing SPF, followed by ads for sunscreen sold as a stand-alone product (19%). None of the ads contained all of the recommendations for safe use of sunscreen: a minimum SPF of 15, both UVA and UVB protection, reapplication instructions, and an adequate application coverage of 2 milligrams per square centimeter. Discussion. Magazine advertising to men, travelers, outdoor recreation users, and parents/ families (totaling a circulation of 41 million readers) during this six-year period were far fewer than those for women, despite high rates of excessive sun exposure in these groups.

We assessed the relationship between sun protection policies and practices at child care centers in Massachusetts. We hypothesized that centers with sun protection policies were more likely to have regular sun protection practices in place compared to centers without these policies. We conducted a telephone survey with directors or assistant directors at 327 child care centers during the summer of 2002. The main outcome measure was sun protection practices, which included time spent outside during mid-day and the use of sunscreen, hats, and protective clothing by the majority of children assessed over the last 5 program days. The 36-item survey also inquired about the center's sun protection policy and included demographic questions. Most centers (73%) reported having a written sun protection policy. Sun protection policies were positively associated with reported sunscreen (chi squared = 14.63, p = 0.0001) and hat use (chi squared = 30.98, p < 0.0001) and inversely associated with time outside (chi squared = 10.76, p = 0.001). Seventy-seven percent of centers followed recommended sunscreen practices. However, centers were far less likely to have recommended hat use (36%) and protective clothing (1.5%) practices. A formal sun protection policy may be an effective way to increase sun protection practices in the child care setting. Further research should assess this relationship in other states. Improving and expanding existing state regulations may be a reasonable strategy to increase sun protection at child care centers.

Objectives: To study whether a noninvasive swabbing technique can detect sunscreen use for up to 6 hours, and whether the technique can detect reapplication of sunscreen. Methods: Thirty volunteer office workers were randomly assigned to have one of a variety of sunscreens applied using recommended application techniques, and half were randomly assigned to have sunscreen reapplied after 3 hours. Alcohol-based swabs were used to obtain a sample from participants' arm at 20 minutes, and hourly from 1 to 6 hours post-application. Absorption readings were analyzed using an UV-visible spectrophotometer. Results: The swabbing technique was consistently able to distinguish the sunscreen from control swabs for up to 6 hours. The absorption readings between 20 minutes and 6 hours were significantly higher than control swabs. There were no differences between the group that had sunscreen reapplied and the group that did not. Conclusion: The sunscreen swabbing technique is an effective noninvasive method for detecting a variety of sunscreen products in adults over a 6-hour period. No differences in absorption readings were found with sunscreen reapplication. This procedure will be a useful adjunct to other objective measures of sun protection and UV radiation exposure, resulting in a more accurate picture of the sun protection habits of individuals.

The American Academy of Pediatrics recommends that palliative care be available to seriously ill hospitalized children, yet little is known about how these services are structured.The study's aim is to report the prevalence of pediatric palliative care services (PCS) and compare the structure of pediatric PCS to adult PCS within California hospitals.We surveyed 377 hospitals to assess the prevalence, structure, and characteristics of pediatric and adult PCS. Hospitals were categorized as children's hospitals with a pediatric-only PCS, mixed hospitals with pediatric and adult PCS, and hospitals with adult-only PCS.All 8 children's hospitals in the state reported having a pediatric PCS, and 36 pediatric PCSs were in mixed hospitals. Mixed hospitals saw fewer (p=0.0001) children per year (mean=5.6, standard deviation [SD]=3.6) than pediatric-only PCSs (mean=168, SD=73). Pediatric-only PCSs treated more patients for noncancer-related illness (82.5%) than pediatric PCSs in mixed hospitals (34.5%, p=0.03) or adult-only PCSs (52.4%, p=0.001). All PCSs were universally available (100%) during weekday business hours and half were available during weekend business hours. Pediatric-only PCSs had a mean total full-time equivalent (FTE) of 1.9, which was not significantly different (p=0.3) from the total FTE for pediatric PCSs in mixed hospitals (mean=1.1, SD=1.4) or for adult-only PCSs (mean=2.7, SD=2.0). However, in mixed hospitals the adult PCS had a significantly higher (p=0.005) total FTE (mean=2.4, SD=1.3) than the pediatric PCS (mean=1.1, SD=1.4).All children's hospital and a few mixed hospitals offer pediatric PCS. Better understanding of the palliative care needs of seriously ill children in mixed hospitals and assessment of the quality of care provided will help ensure that children seen in these hospitals receive necessary care.