BACKGROUND:Adults with advanced cancer often experience low engagement with advance care planning (ACP) and high levels of depression, anxiety, and fear of death/dying. Access to specialist palliative care is limited. This study tests Valued Living, a novel online acceptance-based group intervention designed to increase ACP and improve psychological/spiritual well-being among adults with advanced cancer screening positive for depression or anxiety. Valued Living was delivered online by social workers in community oncology settings. METHODS:Adults with advanced solid tumor cancer (N = 240) and significant depression or anxiety symptoms were randomized 1:1 within cohorts to Valued Living or usual care (UC). Valued Living provided five weekly group sessions by videoconference plus self-paced online modules. Primary outcome was the total number of ACP behavioral steps completed of 12 potential steps (e.g., selecting health care proxy, advanced directives) by 3.5-month follow-up. Secondary outcomes included fear of death, rigid cognitive avoidance of death, depression, anxiety, and spiritual well-being. RESULTS:Valued Living participants completed 1.27 more ACP steps (95% CI, 0.36-2.18; d = 0.36; p = .006) than UC. Largest condition differences were identifying (97.4% vs. 84.2%) and documenting a health care proxy (83.3% vs. 64.9%). Valued Living participants improved more in cognitive avoidance of death (d = 0.36; p = .005), and spiritual well-being (d = 0.42; p < .001) but not fear of death or anxiety. CONCLUSION:The online Valued Living intervention, implemented by social workers in community oncology clinics, increased ACP and well-being among depressed and anxious adults with advanced cancer. Findings support this supportive care approach for the growing population living with advanced cancer. TRIAL REGISTRATION:The trial registration is ClinicalTrials.gov NCT04773639.

The ASCENT Consortium was funded by the National Institutes of Health (NIH) in August 2025 with the goal of advancing palliative care (PC) research, evidence, implementation and practice to improve care of persons with serious illness and those who care for them across the lifespan. ASCENT aims to: (1) Develop and coordinate the national scientific infrastructure and community needed to advance PC research, marshalling research expertise currently distributed across research centers and leveraging the impact of that expertise via partnership and collaboration. Partners include persons who have lived experiences with serious illness personally or as caregivers, practicing clinicians, patient advocacy organizations, professional organizations, community organizations, health care systems/settings/payers across the continuum of care and other NIH-funded consortia and networks. (2) Generate new PC research knowledge and methodologies, directly by conducting projects to establish new knowledge or methods that support the work of PC scientists. (3) Foster career development and impact of the PC scientist workforce by funding career development and pilot and exploratory awards, providing access to methodologic consultations and resources such as PC research methodology and career development curricula and facilitating mentoring. (4) Disseminate PC research findings and facilitate subsequent implementation via a multi-pronged approach, including providing resource libraries, guidance documents, best practices, training, and toolkits to facilitate collaboration and co-design with health system partners and relevant organizations. This article describes the goals, organization, resources, programs and activities of the ASCENT Consortium, intending to raise awareness about ASCENT and encourage engagement with, utilization of and collaboration with ASCENT.

Improving patients' quality of life (QoL) is one of the primary goals of palliative care clinical trials. However, a significant challenge in this area is the "truncation by death problem," where QoL data cannot be observed after a patient dies, potentially introducing bias into statistical analyses. Understanding the impact of truncation by death when estimating the association between QoL and exposure or treatment is essential, especially when a relatively large proportion of subjects die during a study. To address this issue, we propose a Bayesian joint modeling framework that considers dependencies at both the individual and cluster levels while examining longitudinal QoL trajectories and survival outcomes simultaneously. This approach builds on existing joint modeling methods by incorporating cluster-level random effects. We model QoL on a retrospective scale relative to the time of death, while linking survival via both the subject and cluster-level random effects. The longitudinal sub-model also allows for flexible, non-linear QoL trajectories, which are modeled using penalized regression splines. For the survival sub-model, we use a proportional hazards frailty model with a Weibull baseline hazard. The model is estimated using a Bayesian framework, implemented via Markov Chain Monte Carlo (MCMC) sampling. To evaluate the performance of our method, we conducted a comprehensive simulation study including scenarios with different numbers of clusters. We also show results from applying this novel methodology to data from the Reducing End of Life Symptoms with Touch (REST) study.

INTRODUCTION:Rural-dwelling older adults with cancer have limited access to palliative care and face barriers in coordinating palliative care with cancer care. This study aimed to identify barriers and facilitators to care coordination in the palliative care referral and care delivery process for rural-dwelling older adults with cancer from the perspectives of palliative care and oncology healthcare professionals (HCPs). MATERIALS AND METHODS:We conducted focus groups and dyadic semi-structured interviews with palliative care and oncology HCPs. Participants were recruited from clinics within large academic health systems (n = 14) and rural non-affiliated practices (n = 11) in Colorado. We analyzed interviews guided by a reflexive thematic analysis approach. RESULTS:Five themes emerged; within each theme specific barriers and facilitators were identified: (1) Tension of different practice styles delays palliative care referral for rural older adults; (2) Limited capacity prevents early palliative care integration for older adults in rural areas; (3) Structured communication pathways can facilitate coordinated care for older rural adults; (4) Competing influences of rural cultural context on older adults' palliative and oncologic care coordination; and (5) Telehealth has "come a long way," offering more opportunities for rural older adults to receive effective care coordination. Participants also shared insights on intervention strategies targeting barriers to coordinating palliative care with cancer care for rural-dwelling older adults with cancer. DISCUSSION:The identified barriers and facilitators suggest intervention targets to improve care coordination between palliative care and cancer care for rural-dwelling older adults at the health system, provider, and patient levels.

OBJECTIVE:To describe the development and early outcomes of the National Institute on Aging (NIA)-funded Dementia Palliative Care Clinical Trials Training Program (DEM-PCCT). BACKGROUND:Nonpharmacological palliative care interventions can improve the lives of people living with dementia and their care partners, yet evidence remains limited. We developed DEM-PCCT to train investigators and enhance evidence-based dementia palliative care interventions. DEM-PCCT represents the first national program to integrate dementia-specific palliative care training with structured grant development, NIH stage model-based didactics, experiential trainings and longitudinal evaluation of scholar productivity-addressing a critical gap. METHODS:DEM-PCCT is a ten-month program where scholars participate in monthly virtual sessions and a one-week in-person didactic and experiential program. The curriculum to supports participants' research grant development and submission. Participants evaluate curriculum components and report their confidence, comfort and knowledge with conducting dementia clinical trials pre- and post-training. We also track grant submissions, published manuscripts and feasibility outcomes. RESULTS:Three cohorts of interdisciplinary scholars (N = 53) have started and two have completed DEM-PCCT. Program feasibility and satisfaction were high. Confidence and comfort conducting dementia clinical trials significantly improved (P-value <0.05 for both). Most scholars submitted at least one research grant application by program completion, and secured funding. Scholars report continued productivity in grants and publications. CONCLUSION:DEM-PCCT is a novel national training model that advances dementia palliative care by combining didactic training, experiential learning and structured grant development. Thus, DEM-PCCT builds the scientific workforce and serves as a model to accelerate evidence-based dementia palliative care interventions.

Data sharing is increasingly an expectation in health research as part of a general move toward more open sciences. In the United States, in particular, the implementation of the 2023 National Institutes of Health Data Management and Sharing Policy has made it clear that qualitative studies are not exempt from this data sharing requirement. Recognizing this trend, the Palliative Care Research Cooperative Group (PCRC) realized the value of creating a de-identified qualitative data repository to complement its existing de-identified quantitative data repository. The PCRC Data Informatics and Statistics Core leadership partnered with the Qualitative Data Repository (QDR) to establish the first serious illness and palliative care qualitative data repository in the U.S. We describe the processes used to develop this repository, called the PCRC-QDR, as well as our outreach and education among the palliative care researcher community, which led to the first ten projects to share the data in the new repository. Specifically, we discuss how we co-designed the PCRC-QDR and created tailored guidelines for depositing and sharing qualitative data depending on the original research context, establishing uniform expectations for key components of relevant documentation, and the use of suitable access controls for sensitive data. We also describe how PCRC was able to leverage its existing community to recruit and guide early depositors and outline lessons learned in evaluating the experience. This work advances the establishment of best practices in qualitative data sharing.

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.

Quality of life (QoL) is an important outcome to capture in clinical trials evaluating deprescribing interventions. We aimed to conduct a scoping review to examine how QoL has been measured in deprescribing trials among older people and identify potentially relevant QoL scales, to better inform QoL measurement in future deprescribing trials. We searched MEDLINE, Embase, PsycINFO, the Cochrane Central Register of Controlled Trials, Google Scholar, Epistemonikos, ClinicalTrials.gov, and reference lists of eligible studies (from inception to October 2023). We included randomized and non-randomized comparative studies with a control group that evaluated deprescribing and polypharmacy reduction interventions in people ≥ 65 years of age and measured QoL as an outcome. We also included studies describing the development and validation of QoL scales related to deprescribing, polypharmacy, or medication burden in adults ≥ 18 years of age. Two independent reviewers screened titles and abstracts, then full texts. Two independent reviewers extracted data from 25

Objective: The objective of this study was to examine the association between portal use and end-of-life (EOL) outcomes in the last year of life.Methods: A retrospective cohort (n = 6,517) study at Kaiser Permanente Colorado among adults with serious illness deceased between January 1, 2016, and June 30, 2019. Portal use was categorized into engagement types: no use, nonactive, active without a provider, and active with a provider. EOL outcomes were hospitalizations in the month before death, last-year advance directive completion, and hospice use. Association between EOL outcomes and levels of portal use was assessed using chi 2 statistics and generalized linear models.Results: Higher portal engagement types were associated with higher rates of hospitalizations (p = 0.0492), advance directive completion (p = 0.0226), and hospice use (p = 0.0070).Conclusion: Portal use in the last year of life was associated with increases in a poor EOL outcome, hospitalizations, and beneficial EOL outcomes, advance directives, and hospice care.

Outcomes1. Participants will be able to articulate contributions of the PCRC to advancing serious illness research.2. Participants will be able to identify key resources needed to support future serious illness research.Key MessageThe Palliative Care Research Cooperative Group (PCRC) significantly contributed to advancing the science of serious illness care, developing and disseminating key resources, supporting investigator development, and creating an interdisciplinary community of investigators. It demonstrated the importance, effectiveness, and need for a robust infrastructure to support palliative care research.ImportanceRobust multidisciplinary research is critical to meeting the needs of persons with serious illness.Objective(s)The Palliative Care Research Cooperative Group (PCRC) was formed in 2010 to lead, catalyze, and empower a community of investigators to create evidence in serious illness science.Scientific Methods UtilizedThe PCRC was supported by three NINR awards from 2010–2023. The PCRC sought to: 1) develop palliative care research capacity; 2) support the conduct, analysis, and dissemination of high-quality palliative care research; 3) train and mentor scientists; and 4) build community. The PCRC provided resources and training to support rigorous science, conducted a pilot grant award program, and provided assistance via two Centers and four Cores. The PCRC convened meetings, developed special interest groups, hosted webinars, and communicated via newsletters and a website.ResultsThe PCRC included 630 palliative care scientists at 220 institutions in 44 states. The PCRC provided 813 consultations and supported 28 investigators from 15 institutions via extramural grant funding ($70.4 million). The PCRC awarded 44 pilot grants ($1.4 million). 19 pilot awardees received grant awards totaling $15.8 million and published 45 pilot award-related manuscripts. The PCRC conducted 10 Clinical Trial Intensives (CTI) attended by 169 investigators from 78 institutions who subsequently received 140 extramural grants totaling $139.3 million. The PCRC has archived 98 webinars, created nine Special Interest Groups (SIGs) in which 347 members participated, and launched the first palliative care-specific qualitative and quantitative de-identified data repositories.Conclusion(s)The PCRC was the first US research cooperative group focused on palliative care. It fostered an engaged research community to generate and disseminate high-quality, evidence-based research for persons with serious illness.ImpactThe PCRC advanced the science of serious illness research through support of rigorous evidence generation and investigator development, setting the stage for the next era of high-quality palliative care research.KeywordsLeadership, program development and evaluation/Educational, training and supervision

Although older adults with heart failure (HF) and multiple chronic conditions (MCC) frequently rely on caregivers for health management, digital health systems, such as patient portals and mobile apps, are designed for individual patients and often exclude caregivers. There is a need to develop approaches that integrate caregivers into care. This study tested the feasibility of the Social Convoy Palliative Care intervention (Convoy-Pal), a 12-week digital self-management program that includes assessment tools and resources for clinical palliative care, designed for both patients and their caregivers. A randomized waitlist control feasibility trial involving patients over 65 years old with MCC who had been hospitalized two or more times for HF in the past 12 months and their caregivers. Descriptive statistics were used to evaluate recruitment, retention, missing data, self-reported social functioning, positive aspects of caregiving, and the acceptability of the intervention. Of 126 potentially eligible patients, 11 were ineligible and 69 were deceased. Of the 46 eligible patients, 31 enrolled in the trial. Although 48 caregivers were identified, only 15 enrolled. The average age was 76.3 years for patients and 71.6 years for caregivers, with most participants being non-Hispanic White. Notably, 4

Background:Hospitalized patients with palliative care needs often have high levels of physical and psychological symptom distress. Virtual reality (VR) with a music therapy intervention may improve physical and psychological symptoms. Objectives:To assess symptom distress and quality of life (QOL) among hospitalized palliative care patients who participated in a virtual reality-based music therapy (VR-MT) intervention, and to explore VR-MT from the perspectives of health care professionals involved in their care. Design:Single-arm pilot study of a two-day VR-MT intervention. Setting/Participants:Patients seen by an inpatient palliative care consultation service at a U.S. hospital could participate in the VR-MT intervention. Participants created a customized soundtrack with a music therapist and then listened to it while experiencing a 360-degree VR nature-based environment of their choice. Measurements:Patients completed the Edmonton Symptom Assessment System, revised version (ESAS-r) and McGill Quality of Life, revised version (MQOL-R) before and after VR-MT. Members of the participants' health care teams were interviewed. Results:Seventeen patients completed VR-MT (range 20-79 years of age, 59% women). Moderate clinical improvements were observed for total ESAS-r score (Cohen's d effect size, 0.68), physical distress subscale (0.52), and psychological distress subscale (0.60); small improvements were observed in total MQOL-r score (0.26) and the existential subscale (0.27). Health care team members described the value of VR-MT as facilitating meaningful conversations. Conclusions:This pilot study of VR combined with a music therapy intervention for hospitalized patients with palliative care needs supports opportunities for future study of potential improvements in symptom distress and QOL.

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.

The Palliative Care Research Cooperative Group (PCRC) formed to lead, catalyze, and empower a community of scientists to build an evidence base to ensure high-quality care and optimal well-being for persons with serious illness and their caregivers. The PCRC grew to 630 members representing 220 distinct sites. The PCRC awarded 44 pilot grant awards (total investment $1.4 million), resulting in $15.8 million in extramural grant funding, supported monthly webinars, an annual mentorship selective, "Clinical Trials Intensives," research consultation, and grant review. Among the 169 Clinical Trials Intensive participants, 74 subsequently achieved extramural grant award funding with direct costs of over $139 million. The PCRC supported the submission of extramural research applications and fostered community through annual meetings, special interest groups, newsletters, and its website. The PCRC filled an important void in serious illness science and set the stage for the next era of advancing serious illness research.

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 pound 2 and 2 pound 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. J Pain Symptom Manage 2024;67:e1-e7. (c) 2023 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Outcomes1. Understand the background, context, and curricular content of a training program to teach clinical trials skills for palliative care research.2. Describe the the impact (satisfaction, skill confidence, number of grants acquired, and total $ amount) of the palliative care Clinical Trials Intensive.Key MessageA Clinical Trials Intensive (CTI) program focused on providing scientists with skills to conduct rigorous palliative care clinical trials has trained 207 investigators over 6 years. Participants reported high satisfaction and confidence in the conduct of palliative care trials and were awarded 140 extramural grants totaling $139.3 million.ImportanceWhile a growing body of research shows benefit for palliative care interventions in the context of serious illness, large gaps in evidence remain. Currently, too few palliative care scientists have the skills to rigorously conduct the clinical trials needed to improve care.Objective(s)We describe: 1) the creation and 2) the impact (satisfaction, skill confidence, number of grants acquired, and total $ amount) of the palliative care Clinical Trials Intensive (CTI).Scientific Methods UtilizedInterdisciplinary senior faculty developed the program curriculum and selected participants following the NIH review model. Scholars completed a program evaluation (quantitative, 1-5 scale with 5= excellent; qualitative) on program satisfaction (content, length, organization, overall value and networking opportunities), and confidence in palliative care skills. Scholars completed annual surveys on grants acquired. We used descriptive analyses to summarize quantitative data and deductive analyses to map qualitative responses onto the satisfaction and confidence domains.ResultsThe CTI components include: 1) pre-work; 2) didactics; 3) faculty consultations; and 4) small group work designing a new clinical trial building off limitations of a published study. Since 2016, we trained 207 investigators across 12 cohorts, from 122 institutions. Disciplines included nursing (69), psychology (22), social work (13), medicine (68), and others or combined degrees (35). Quantitative analyses showed high confidence and satisfaction with the program ranging from 4.2-4.9 across all domains assessed, which aligned with qualitative responses. Participation by investigators has led to 140 funded grants from 60 different fundings sources, totaling $139.3 million.Conclusion(s)The CTI increased skills and funding success in palliative care research.ImpactThe CTI is an effective and efficient solution to increase number and rigor of palliative care clinical trials.KeywordsEducational, training and supervision/Leadership, program development and evaluation

CONTEXT:Scientific journals are the primary source for dissemination of research findings, and this process relies on rigorous editorial and peer-review. As part of continuing efforts by the Journal of Pain and Symptom Management (JPSM) to advance equity, diversity, and inclusion, JPSM's leadership requested an external evaluation of their publication decisions. OBJECTIVES:1) Describe primary author characteristics associated with final decisions to accept or reject manuscripts submitted for publication; 2) Report on whether there are potential publication biases in the JPSM editorial or peer-review processes. METHODS:Data consisted of self-reported primary author demographic characteristics associated with manuscript submissions between June 18, 2020, and December 31, 2022. Characteristics included region of residence, race, gender, and ethnicity. A multiple logistic regression model was used to estimate adjusted odds of rejection for each author characteristic. RESULTS:A total of 1940 submissions were evaluated. Compared to authors residing in North America, authors residing in Asia had six-fold greater odds of rejection, authors residing in Europe had four-fold greater odds of rejection, and authors residing in other regions had two-fold greater odds of rejection. Female authors submitted 1.7 times more papers than males, but there was no difference in acceptance rates of their papers in adjusted analysis. CONCLUSION:In this analysis of publication decisions by the JPSM, there were differences in acceptance rates by region of residence, ethnicity, and race but not by gender. Asian authors and authors residing in regions outside of North America had greater odds of rejection compared to White or North American authors.

Background: The involvement of Medical Aid in Dying (MAiD) experts to guide MAiD prescribers who may be unfamiliar with the process is unknown.Objective: To examine the involvement of consulting services on physician experiences participating in MAiD activities.Design: This is an anonymous survey.Participants: Colorado physicians (n = 583) likely to care for MAiD-eligible patients.Measures: Consulting services used in a recent MAiD case and perspectives on use of a MAiD service.Results: Of 300 physicians (response rate 55%), 49 physicians had served as a MAiD attending and/or consulting physician. In a recent MAiD case, commonly used services included palliative care (92%), hospice (81%), social work (78%), or a MAiD service (63%). When a MAiD service was not used vs. used, respondents felt the MAiD case was less professionally risky (28% vs. 7%, p = 0.04).Conclusion: Along with palliative care, hospice, and social work, use of an experienced MAiD service was relatively common. The role and function of MAiD services warrant further exploration.