Does a novel community-based outpatient palliative care intervention for Parkinson's disease and related disorders improve care? Qualitative results from patients and care partners.

BACKGROUND: Palliative care has the potential to address significant unmet needs in people with Parkinson's disease and related disorders, but models that rely on in-person specialty palliative care teams have limited scalability. AIM: To describe patient and care partner experiences with a novel, community-based palliative care intervention for Parkinson's disease. DESIGN: Qualitative study embedded in a randomized clinical trial to document participant experiences with a novel palliative care intervention (community neurologist training and remote team-based specialist palliative care). Transcripts were coded and thematically analyzed through a combination of team-based inductive and deductive coding. SETTING/PARTICIPANTS: Twenty-eight patients and 33 care partners purposively sampled from participants in a randomized clinical trial of a palliative care intervention for Parkinson's disease and related disorders conducted at nine sites. RESULTS: Benefits of the intervention included management of a wider range of non-motor symptoms, facilitation of conversations about the future, greater engagement with the health care team, and increased referrals to resources. Participants identified areas of improvement, including uptake of palliative care training by community neurologists, additional prognostic counseling, and clarity and timeliness of communication with the multidisciplinary team. CONCLUSIONS: Clinicians caring for people with Parkinson's disease and related disorders should screen for non-motor symptoms, provide regular prognostic counseling, and refer to specialty palliative care services earlier in the course of illness. Future interventions should be designed to promote uptake of palliative care training by community neurologists and further optimize referral to and coordination with in-person or remote specialty palliative teams.

"We've Got to Bring Information to Where People Are Comfortable": Community-Based Advance Care Planning with the Black Community.

BACKGROUND: People identifying as Black/African American are less likely to engage in advance care planning (ACP) compared to their White peers, despite the association of ACP with improved patient and caregiver outcomes. OBJECTIVES: Assess facilitators/barriers to ACP in the San Francisco (SF) Black community and co-design/implement/test community-based ACP pilot events. DESIGN: Community-based participatory research, including qualitative research, intervention development, and implementation. PARTICIPANTS: In partnership with the SF Palliative Care Workgroup (which includes health system, city, and community-based organizations), we formed an African American Advisory Committee (n = 13). We conducted 6 focus groups with Black older adults (age ≥ 55), caregivers, and community leaders (n = 29). The Advisory Committee then selected 5 community-based organizations through a widespread request for proposal. These community-based organizations designed and implemented community-based pilot events to support ACP engagement. MAIN MEASURES: Two authors analyzed recorded focus group transcripts using thematic analysis. We assessed pre- vs post-event readiness to engage in ACP (validated ACP Engagement Survey; 1-4 scale, 4 = most ready) using Wilcoxon signed rank tests and assessed event acceptability with open-ended questions. KEY RESULTS: Themes included the importance of ACP to the Black community (sub-themes: strengthens families; preserves dignity, particularly for sexual/gender minorities; is tied to financial planning) and facilitators for increasing ACP engagement (sub-themes: culturally relevant materials; events in trusted community spaces including Black-owned businesses). A total of 114 participants attended 5 events; 74% identified as Black, and 16% as sexual/gender minorities. Readiness to engage in ACP was similar pre- vs post-events; 98% would recommend the events to others. CONCLUSIONS: Community-based ACP events designed and led by and for the Black community are highly acceptable. Novel insights underscored the importance of financial planning as part of ACP and the role of Black-owned businesses as trusted spaces for ACP-related discussions.

Lessons from the COVID-19 pandemic for improving outpatient neuropalliative care: A qualitative study of patient and caregiver perspectives.

BACKGROUND: COVID-19 has impacted persons with serious illness, including those with chronic, neurodegenerative conditions. While there are several reports on COVID-19's impact on inpatient palliative care, literature is limited about the impact on outpatient care which may be more relevant for these patients. AIM: To generate a person-centered description of the impact of COVID-19 from the perspectives of patients living with neurodegenerative disease and caregivers to improve outpatient palliative care delivery. DESIGN: This qualitative study used rapid analysis via matrix design to identify emergent themes related to participant perspectives on the challenges of COVID-19. Data sources included semi-structured interviews, open-ended survey responses, medical record documentation and participant-researcher communications. SETTING/PARTICIPANTS: Data was collected from 108 patients with Parkinson's disease, Alzheimer's disease or related disorders and 90 caregivers enrolled in a multicenter, clinical trial of community-based, outpatient palliative care between March 20, 2020 and August 8, 2020 (NCT03076671). RESULTS: Four main themes emerged: (1) disruptions to delivery of healthcare and other supportive services; (2) increased symptomatic and psychosocial needs; (3) increased caregiver burden; (4) limitations of telecommunications when compared to in-person contact. We observed that these themes interacted and intersected. CONCLUSIONS: Patients and caregivers have unmet care needs because of the pandemic, exacerbated by social isolation. While telemedicine has helped improve access to healthcare, patients and caregivers perceive clear limitations compared to in-person services. Changes in society and healthcare delivery in response to COVID-19 highlight ongoing and novel gaps that must be addressed to optimize future outpatient palliative care for neurologic illness.

Drivers of care costs and quality in the last 3 months of life among older people receiving palliative care: A multinational mortality follow-back survey across England, Ireland and the United States.

BACKGROUND: Care costs rise towards the end of life. International comparison of service use, costs and care experiences can inform quality and improve access. AIM: The aim of this study was to compare health and social care costs, quality and their drivers in the last 3 months of life for older adults across countries. Null hypothesis: no difference between countries. DESIGN: Mortality follow-back survey. Costs were calculated from carers' reported service use and unit costs. SETTING: Palliative care services in England (London), Ireland (Dublin) and the United States (New York, San Francisco). PARTICIPANTS: Informal carers of decedents who had received palliative care participated in the study. RESULTS: A total of 767 questionnaires were returned: 245 in England, 282 in Ireland and 240 in the United States. Mean care costs per person with cancer/non-cancer were US$37,250/US$37,376 (the United States), US$29,065/US$29,411 (Ireland), US$15,347/US$16,631 (England) and differed significantly (F = 25.79/14.27, p < 0.000). Cost distributions differed and were most homogeneous in England. In all countries, hospital care accounted for > 80% of total care costs; community care 6%-16%, palliative care 1%-15%; 10% of decedents used ~30% of total care costs. Being a high-cost user was associated with older age (>80 years), facing financial difficulties and poor experiences of home care, but not with having cancer or multimorbidity. Palliative care services consistently had the highest satisfaction. CONCLUSION: Poverty and poor home care drove high costs, suggesting that improving community palliative care may improve care value, especially as palliative care expenditure was low. Major diagnostic variables were not cost drivers. Care costs in the United States were high and highly variable, suggesting that high-cost low-value care may be prevalent.

How empowering is hospital care for older people with advanced disease? Barriers and facilitators from a cross-national ethnography in England, Ireland and the USA.

Background: patient empowerment, through which patients become self-determining agents with some control over their health and healthcare, is a common theme across health policies globally. Most care for older people is in the acute setting, but there is little evidence to inform the delivery of empowering hospital care. Objective: we aimed to explore challenges to and facilitators of empowerment among older people with advanced disease in hospital, and the impact of palliative care. Methods: we conducted an ethnography in six hospitals in England, Ireland and the USA. The ethnography involved: interviews with patients aged ≥65, informal caregivers, specialist palliative care (SPC) staff and other clinicians who cared for older adults with advanced disease, and fieldwork. Data were analysed using directed thematic analysis. Results: analysis of 91 interviews and 340 h of observational data revealed substantial challenges to empowerment: poor communication and information provision, combined with routinised and fragmented inpatient care, restricted patients' self-efficacy, self-management, choice and decision-making. Information and knowledge were often necessary for empowerment, but not sufficient: empowerment depended on patient-centredness being enacted at an organisational and staff level. SPC facilitated empowerment by prioritising patient-centred care, tailored communication and information provision, and the support of other clinicians. Conclusions: empowering older people in the acute setting requires changes throughout the health system. Facilitators of empowerment include excellent staff-patient communication, patient-centred, relational care, an organisational focus on patient experience rather than throughput, and appropriate access to SPC. Findings have relevance for many high- and middle-income countries with a growing population of older patients with advanced disease.

Improving the Quality of Palliative Care Through National and Regional Collaboration Efforts.

BACKGROUND: The 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. METHODS: The 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. RESULTS: Three 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. CONCLUSIONS: National 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.

Hispanic/Latinx and Spanish Language Concordance Among Palliative Care Clinicians and Patients in Hospital Settings in California.

Background: Members of racial or ethnic minority groups utilize palliative care (PC) services less than non-Hispanic White patients and multiple factors contribute to this disparity. The impact of racial, ethnic, and language (REL) concordance between patients and clinicians has been demonstrated in general medical populations, but not in PC populations. We characterized the racial and ethnic composition and languages spoken of California PC clinicians and patients to examine clinical impacts of REL concordance. Methods: Using Palliative Care Quality Network data, 15 inpatient teams were identified in California that had collected data on patient race/ethnicity and language. Patient and clinician data were analyzed using means and medians for continuous variables, and chi-squared tests to explore similarities and differences between clinician and patient data. Results: 51 clinicians from nine teams completed the survey. The largest non-White and non-English speaking groups among patients and clinicians identified as Hispanic/Latinx (31.5% of patients, 16.3% of clinicians) and as Spanish speakers (22.6% of patients, 7.5% of clinicians). There was a significantly higher proportion of Hispanic/Latinx patients compared to clinicians (p-value 0.01), with Southern California demonstrating the largest difference (30.4% of patients vs. 10.7 % of clinicians, p-value 0.01). Similar proportions of patients and clinicians reported Spanish fluency (22.6% vs 27.5%, p-value 0.31). Discussion: We found significant differences in the racial/ethnic distributions of Hispanic/Latinx patients and clinicians in California, prompting consideration of whether a lack of representation of Hispanic/Latinx clinicians relative to the patient population may contribute to lower palliative care utilization among Hispanic/Latinx patients.

The "Surprise Question" for Prognostication in People With Parkinson's Disease and Related Disorders.

CONTEXT: Parkinson's disease and related disorders (PDRD) are fatal neurodegenerative disorders characterized by a fluctuating course that can complicate prognostication. The "surprise question" (SQ: "Would you be surprised if your patient died in the next year?") has been used to identify patients with limited prognosis but has not been assessed in PDRD. OBJECTIVES: To determine the validity of the SQ in predicting 12-month mortality in PDRD. METHODS: Data was analyzed from 301 patients and 34 community-based neurologists who were participating in a clinical trial of outpatient palliative care for patients with PDRD. Clinicians answered the SQ for each patient at baseline. Descriptive statistics at baseline, chi-square tests of independence, 2 × 2 and 2 × 3 cross tables were used. Survival analysis compared SQ responses using Kaplan-Meier curves. Risk estimate analyses identified patient characteristics associated with clinicians' responses. RESULTS: Mortality was 10.3% (N = 31) at 1 year. The sensitivity and specificity of the SQ was 80.7% and 58.9%, respectively with AUC = 0.70, positive predictive value of 18.4% and negative predictive value of 96.4%. Older age, atypical parkinsonism, and dementia were associated with responding "no" to the SQ. CONCLUSION: The SQ is sensitive to 12-month mortality in PDRD, with a high negative predictive value. The SQ may be useful for identifying patients less likely to die within a year and may be useful for identifying patients with palliative care needs outside of end-of-life care. This latter use may assist in mobilizing early and timely referral to specialist palliative care.

The Pediatric Palliative Care Quality Network: Palliative Care Consultation and Patient Outcomes.

BACKGROUND AND OBJECTIVES: Quality benchmarking in pediatric palliative care (PPC) helps identify gaps in care and guides quality improvement. Our study objective was to characterize inpatient PPC referral processes, interdisciplinary PPC delivery, and patient outcomes from a multisite PPC data repository. METHODS: Cross-sectional, administrative data analysis of 1587 PPC inpatient encounters at 5 US hospitals enrolled in the Pediatric Palliative Care Quality Network (2016-2022). PPC clinicians submitted data to a national repository for key quality indicators. Program and referral characteristics, care processes, and outcomes were examined descriptively. Time to referral, time on PPC service, and total hospital length of stay were compared by discharge disposition (alive or dead). RESULTS: Programs were in service for 13 (range 6-17) years on average. Most encounters involved children >1 year old (77%). Common diagnoses were solid tumor cancer (29%) and congenital or chromosomal conditions (14%). Care was often provided by ≤2 PPC team members (53%) until discharge (median = 7d, interquartile range 2-23). There were often multiple reasons for PPC referral, including psychosocial support (78%), goals of care discussions/advance care planning (42%), management of non-pain symptoms (34%), and pain (21%). Moderate-severe symptoms improved by second assessment for pain (71%), dyspnea (51%), fatigue (46%), and feeding issues (39%). CONCLUSIONS: Referrals to PPC were made early during hospitalization for psychosocial and physical symptom management. Moderate-severe symptom distress scores at initial assessment often improved. Findings highlight the need to ensure interdisciplinary PPC team staffing to meet the complex care needs of seriously ill children.

Patient and Family Outcomes of Community Neurologist Palliative Education and Telehealth Support in Parkinson Disease.

Importance: Parkinson disease and related disorders (PDRD) are the fastest growing neurodegenerative illness in terms of prevalence and mortality. As evidence builds to support palliative care (PC) for PDRD, studies are needed to guide implementation. Objective: To determine whether PC training for neurologists and remote access to a PC team improves outcomes in patients with PDRD in community settings. Design, Setting, and Participants: This pragmatic, stepped-wedge comparative effectiveness trial enrolled and observed participants from 19 community neurology practices supported by PC teams at 2 academic centers from March 8, 2017, to December 31, 2020. Participants were eligible if they had PDRD and moderate to high PC needs. A total of 612 persons with PDRD were referred; 253 were excluded. Patients were excluded if they had another diagnosis meriting PC, were receiving PC, or were unable or unwilling to follow study procedures. Patients received usual care or the intervention based on when their community neurologist was randomized to start the intervention. Data were analyzed from January 2021 to September 2023. Intervention: The intervention included (1) PC education for community neurologists and (2) team-based PC support via telehealth. Main Outcomes and Measures: The primary outcomes were differences at 6 months in patient quality of life (QOL; measured by the Quality of Life in Alzheimer Disease Scale [QOL-AD]) and caregiver burden (Zarit Burden Interview) between the intervention and usual care. Results: A total of 359 patients with PDRD (233 men [64.9%]; mean [SD] age, 74.0 [8.8] years) and 300 caregivers were enrolled. At 6 months, compared with usual care, participants receiving the intervention had better QOL (QOL-AD score, 0.09 [95% CI, -0.63 to 0.82] vs -0.88 [95% CI, -1.62 to -0.13]; treatment effect estimate, 0.97; 95% CI, 0.07-1.86; P = .03). No significant difference was observed in caregiver burden (Zarit Burden Interview score, 1.19 [95% CI, 0.16 to 2.23] vs 0.55 [95%, -0.44 to 1.54]; treatment effect estimate, 0.64; 95% CI, -0.62 to 1.90; P = .32). Advance directive completion was higher under the intervention (19 of 38 [50%] vs 6 of 31 [19%] among those without directives at the beginning of the study; P = .008). There were no differences in other outcomes. Conclusions and Relevance: PC education for community neurologists and provision of team-based PC via telehealth is feasible and may improve QOL and advance care planning. Overall treatment effects were small and suggest opportunities to improve both the intervention and implementation. Trial Registration: ClinicalTrials.gov Identifier: NCT03076671.

Honoring What We Say We Do: Developing Real-World Tools for Routine Family Caregiver Assessment and Support in Outpatient Palliative Care.

Background: Family caregivers are essential to the care of patients with serious illness and supporting caregivers alongside patients is a core tenet of palliative care. While there is increasing recognition of the need to support family caregivers, there are limited resources to assess and support their needs in a systematic way in outpatient palliative care practice. Objectives: The aim of this study is to develop an approach to conducting assessments of routine needs and support of family caregivers in outpatient palliative care practice using a quality improvement framework. Setting: Seven, interdisciplinary, outpatient palliative care teams in California collaborated in this study. Measurements: Family caregivers were surveyed about levels of distress and support using a 10-point scale and asked about specific areas of need for support. Usefulness of a supportive caregiver resource was also measured on a 10-point scale, in addition to qualitative assessment of clinician satisfaction and feasibility of routine caregiver assessment and support. Results: Seven hundred thirty-six caregiver needs assessments were conducted and 44 supportive tool kits were distributed. A majority of family caregivers reported moderate or severe distress related to caregiving (score ≥4 on a 10-point scale). The most common sources of distress included emotional distress, worry caregiving was negatively impacting their own health, and planning for the future. Most caregivers reported feeling moderately or very well supported, most commonly by family, friends, and faith/spirituality. Caregivers rated the supportive tool kit an 8.4 on a 10-point usefulness scale and 92% would recommend it to others. Conclusions: We successfully developed and piloted practical clinical tools for routine family caregiver screening and support.

Differential Use of Outpatient Palliative Care by Demographic and Clinical Characteristics.

CONTEXT: Little is known about equity in utilization of outpatient palliative care (PC). OBJECTIVES: To explore whether patient-level factors are associated with completing initial and follow-up visits among patients referred to outpatient PC. METHODS: Using electronic health record data, we generated a cohort of all adults referred to outpatient PC at University of California, San Francisco October 2017-October 2021. We assessed whether demographic and clinical characteristics were associated with completion of 1) an initial PC visit and 2) at least one follow-up visit. RESULTS: Of patients referred to outpatient PC (N = 6,871), 60% completed an initial visit; 66% of those who established care returned for follow-up. In multivariable models, patients who were less likely to complete an initial visit were older (OR per decade 0.94; 95% confidence interval [CI] 0.89-0.98), Black (OR 0.71; 95% CI 0.56-0.90), Latinx (OR 0.69; 95% CI 0.57-0.83), unpartnered (OR 0.80; 95% CI 0.71-0.90), and had Medicaid (OR 0.82; 95% CI 0.69-0.97). Among patients who completed an initial visit, those less likely to complete a follow-up visit were older (OR 0.88; 95% CI 0.82-0.94), male (OR 0.83; 95% CI 0.71-0.96), preferred a language other than English (0.71; 95% CI 0.54-0.95), and had a serious illness other than cancer (OR 0.74; 95% CI 0.61-0.90). CONCLUSION: We found that Black and Latinx patients were less likely to complete an initial visit and those with a preferred language other than English were less likely to complete a follow-up visit. To promote equity in PC, these differences and their impact on outcomes must be explored.

A Systematic Approach to Assessing and Addressing Palliative Care Needs in an Outpatient Population.

CONTEXT/OBJECTIVES: A critical frontier for palliative medicine is to develop systems to routinely and equitably address the palliative care (PC) needs of seriously ill populations. METHODS: An automated screen identified Medicare primary care patients who had serious illness based on diagnosis codes and utilization patterns. A stepped-wedge design was used to evaluate a six-month intervention through which a healthcare navigator assessed these seriously ill patients and their care partners for PC needs in the domains of 1) physical symptoms, 2) emotional distress, 3) practical concerns, and 4) advance care planning (ACP) via telephone surveys. Identified needs were addressed with tailored PC interventions. RESULTS: A total of 292/2175 (13.4%) patients screened positive for serious illness. A total of 145 completed an intervention phase; 83 completed a control phase. Severe physical symptoms were identified in 27.6%, emotional distress in 57.2%, practical concerns in 37.2%, and ACP needs in 56.6%. Twenty-five intervention patients (17.2%) were referred to specialty PC compared to six control patients (7.2%). Prevalence of ACP notes increased 45.5%-71.7% (p = 0.001) during the intervention and remained stable during the control phase. Quality of life remained stable during the intervention and declined 7.4/10-6.5/10 (P =0.04) during the control phase. CONCLUSION: Through an innovative program, patients with serious illness were identified from a primary care population, assessed for PC needs, and offered specific services to meet those needs. While some patients were appropriate for specialty PC, even more needs were addressed without specialty PC. The program resulted in increased ACP and preserved quality of life.

Palliative care to support the needs of adults with neurological disease.

Neurological diseases cause physical, psychosocial, and spiritual or existential suffering from the time of their diagnosis. Palliative care focuses on improving quality of life for people with serious illness and their families by addressing this multidimensional suffering. Evidence from clinical trials supports the ability of palliative care to improve patient and caregiver outcomes by the use of outpatient or home-based palliative care interventions for people with motor neuron disease, multiple sclerosis, or Parkinson's disease; inpatient palliative care consultations for people with advanced dementia; telephone-based case management for people with dementia in the community; and nurse-led discussions with decision aids for people with advanced dementia in long-term care. Unfortunately, most people with neurological diseases do not get the support that they need for their palliative care under current standards of healthcare. Improving this situation requires the deployment of routine screening to identify individual palliative care needs, the integration of palliative care approaches into routine neurological care, and collaboration between neurologists and palliative care specialists. Research, education, and advocacy are also needed to raise standards of care.

"Advocating for what we need": A CBPR approach to advance care planning in the Latinx older adult community.

BACKGROUND: Advance care planning (ACP) is low among Latinx older adults. We used community-based participatory research (CBPR) to identify ACP barriers/facilitators and design community-based ACP events. METHODS: In partnership with community-based organizations, clinicians, and local government, we formed a Latinx Community Committee (n = 13 community members). We then conducted 6 focus groups with Latinx-identifying, English or Spanish-speaking older adults (age ≥ 55), caregivers, and community leaders to assess ACP barriers/facilitators. We analyzed transcripts using thematic analysis and, based on these learnings, designed and implemented community-based ACP events. Using a validated survey, we assessed acceptability and pre-to-post-event ACP readiness (4-point scale; 4 = most ready; 0.2 change considered meaningful) with Wilcoxon signed-rank tests. RESULTS: Focus groups included 10 Spanish-speaking older adults, 8 caregivers, and 10 community leaders. Themes highlighted the importance of ACP (e.g., means of advocacy), barriers (e.g., how to start conversations), and facilitators (e.g., trusted community spaces) in the Latinx community. Ninety-seven people attended 5 events targeting 3 Latinx populations (LGBTQI+, intergenerational, and older adults broadly). Overall pre-to-post-event ACP readiness increased (2.62 (SD 0.97) to 2.95 (SD 0.93); p = 0.05). Readiness to document wishes increased significantly (2.44 (SD 1.0) to 2.98 (SD 0.95); p = 0.003). Most reported being comfortable attending events (85%) and would recommend them to others (90%). CONCLUSIONS: This study describes a feasible, acceptable, and effective CBPR ACP intervention. Co-developed community events represent a promising approach to reducing disparities in ACP among the Latinx population.

"At the End I Have a Say": Engaging the Chinese Community in Advance Care Planning.

CONTEXT: Despite the association of advance care planning (ACP) with improved patient and caregiver outcomes, Chinese American elders have low rates of ACP. OBJECTIVES: Assess ACP facilitators/barriers in the San Francisco (SF) Chinese community and codesign, implement, and test community-based ACP-promoting pilot events. METHODS: A Chinese Community Committee (N = 19 community-based organization leaders, health system representatives, community members) conducted focus groups in Cantonese and English with Chinese older adults (age ≥55), caregivers, and community leaders. The Committee designed and implemented pilot events in-person and online. We analyzed focus group data using thematic analysis; assessed pre-to-post-event readiness to engage in ACP (validated survey; 14 scale, 4 = most ready); and assessed event acceptability. RESULTS: A total of 34 people participated in six focus groups. Themes described Chinese community-specific importance of ACP (e.g., reduces family burden), barriers (e.g., younger generations lack tools to discuss ACP with elders and vice versa), and facilitators (e.g., intergenerational events, culturally/linguistically appropriate materials). Based on focus groups findings, the Committee developed a novel ACP tool and designed intergenerational events. A total of 195 participants attended 10 events; 95% were Chinese, 90% spoke Chinese languages, 80% were women. ACP readiness increased significantly (1.66 [SD 0.84] vs. 2.03 [SD 0.85]; P < 0.001); 94% of participants were comfortable attending and 96% would recommend events. CONCLUSION: Community-developed intergenerational events that highlight the value of ACP and address barriers are acceptable and increase ACP engagement in the Chinese community.

Depression is a common and chronic comorbidity in patients with interstitial lung disease.

BACKGROUND AND OBJECTIVE: Little is known about depression in interstitial lung disease (ILD). The aim of this study was to determine the prevalence of depression, characterize the association of depression with clinical variables and describe the natural history of depression in patients with ILD. METHODS: In this prospective cohort study, clinical variables were recorded at baseline and 6 months. Depression was measured with the Centre for Epidemiologic Studies Depression scale. Depression prevalence was determined using the established threshold of >15 points. Multivariate linear regression was used to determine the baseline features that independently correlated with baseline depression score and that predicted depression severity at follow-up. RESULTS: Fifty-two subjects were enrolled, and 45 returned for follow-up (three deaths, one lung transplant). Prevalence of depression was 21% at baseline. Independent predictors of depressive symptoms at baseline included dyspnoea severity, pain severity, sleep quality and forced vital capacity (R(2) 0.67). The odds of clinically meaningful depression at follow-up were 34-fold higher for subjects who had clinically meaningful depression at baseline compared with those who were not (95% confidence interval 3.5-422, P < 0.0005). Baseline depression score was the strongest predictor of depression score at follow-up (r 0.59, P < 0.00005). CONCLUSIONS: Depressive symptoms in ILD are common, persistent, and strongly and independently correlated with dyspnoea, pain, sleep quality and forced vital capacity. Clinically meaningful depression at baseline is the most important predictor of depressive symptoms at follow-up. Patients with ILD should routinely be screened for depression.

Recommendations for Integrating Antiracist Practice at the JPSM.

Journals like the JPSM are part of the system of gatekeepers to the academic literature that defines and represents our field. This paper explores how the JPSM leadership, staff and editorial board can design, implement, and foster active antiracist ideas and practice at the individual and system level, focused on an examination of who is represented across the organization, reflective practice on individual attitudes and beliefs, and policy analysis and changes. We explore the current and historical context in the United States that makes this approach foundational to the work of addressing and dismantling systemic racism. We define key terms and a theoretical framework while proposing concrete steps the journal can take in this effort. Together, these actions can actively challenge the ways in which white supremacy shapes the status quo, marginalizing Black Indigenous People of Color, and dehumanizing all. While this paper focuses on discrete actions the JPSM can undertake, it also serves as an invitation to the field at large to commit to the daily practice of antiracism. We do not promote ourselves as experts, only as individuals interested in and committed to antiracism and invite our colleagues to correct, edit, and build upon our suggestions. We hope our proposed approach helps our field to address all forms of oppression, including those due to gender, sexual orientation, socioeconomic status, and profession.

Trends in Palliative Care Consultations in Critically Ill Patient Populations, 2013-2019.

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 < 0.0001 for all trends). 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.