Journal of palliative medicine最新文献

Background: People with advanced cancer often face significant challenges in everyday activities, especially within their home environments, where they spend most of their time. The Cancer Home-Life Intervention is an occupational therapy-based program supporting everyday activities in people with advanced cancer living at home. Aim: To examine the cost-utility and cost-effectiveness of the Cancer Home-Life Intervention compared to usual care over six months. Methods: This economic evaluation with a societal perspective was conducted alongside a randomized controlled trial (ClinicalTrials.gov: NCT02356627). Quality-adjusted life years (QALYs) and activities of daily living motor ability accounted for the outcome. Costs included primary and secondary health care, domestic care, assistive devices, and participants' out-of-pocket costs. A total of 242 adults with advanced cancer were included from two Danish University Hospitals and randomized 1:1 to the Cancer Home-Life Intervention or usual care. Primary analysis included 172 participants alive at six months follow-up. Results: The intervention showed no statistically significant improvement in either QALYs or activities of daily living motor ability compared to usual care. However, the cost-utility analysis revealed a 72% probability of the intervention being cost-effective, regardless of the willingness-to-pay threshold per QALY gained. The probability of cost-effectiveness for activities of daily living motor ability started at 26% and increased to 58%. Sensitivity analyses supported these findings. Conclusion: The Cancer Home-Life Intervention showed limited potential for cost-effectiveness compared to usual practice. The cost-utility analysis revealed a 72% probability of cost-effectiveness. However, these findings should be interpreted cautiously due to small, nonstatistically significant improvements in QALYs.

Background: International research projects, such as Horizon 2020 (H2020) and ERASMUS+, generate numerous scientific and educational outcomes. However, these are often disseminated in fragmented formats, limiting long-term access and impact. Language barriers further complicate the dissemination in professional communities that do not speak English. Interactive infographic summaries (IISs) offer an innovative solution to these challenges. Objectives: To describe the development of the IIS as a tool to present key findings from three European palliative care projects and the preliminary results of the dissemination. Methods: The IISs developed for three European projects (H2020 Palliative Sedation, ERASMUS+ Research for Palliative Care Clinicians [RESPACC], and ERASMUS+ E-Learning on Palliative Care for International Students [ELPIS]) were selected. These documents were designed using visual communication principles and included interactive elements, such as links to additional resources (videos, articles, and tools). The infographics were translated into multiple languages, and their effectiveness was evaluated based on web traffic, downloads, and readers' feedback. Results: The infographics in 11 languages were shared via project websites, online repositories, and social media. The H2020 Palliative Sedation infographic reached thousands of downloads. The RESPACC infographic allowed free access to research tools in four languages. The ELPIS infographic showcased seven educational projects and was published by all participating universities. Conclusions: IISs facilitate the dissemination of an extensive body of complex scientific information, overcoming barriers of fragmentation and language. They should be considered an essential component in future projects for broadening accessibility and engagement with research findings in palliative care.

Systemic autoimmune rheumatic diseases (SARDs) consist of a broad range of immune-mediated multisystem diseases. They are chronic, incurable illnesses that often present in early to mid-life and can be associated with a high symptom burden, disability, and early mortality. Treatment guidelines for similar chronic, life-limiting conditions with uncertain disease courses now recommend palliative care (PC) assessment at the time of diagnosis. Recently, the first rheumatology treatment guidelines to recommend PC were also published. Integration of PC into rheumatology offers an opportunity to improve quality of life and deliver better goal-concordant care for people with severe rheumatic disease. This article provides 10 tips to guide PC clinicians when caring for people with rheumatic diseases.

Background: The pediatric literature describes reliance on community-based palliative and hospice organizations in extending the reach of care for children. Objective: To provide an updated post-pandemic snapshot of pediatric palliative and hospice services and staffing offered by community-based organizations in the United States. Design and Subjects: This study utilized an online survey distributed to organizational members of the National Alliance for Care at Home in the United States. Results: A total of 295 palliative and hospice organizations from 50 states and Washington, DC, responded. Half (49%) of organizations reported increasing the number of pediatric patients accepted into their care over the past five years. A total of 6% of responding programs newly started to accept pediatric patients between 2020 and the current survey completion. Programs are less likely to include perinatal (61%) patients compared to infants through young adults (94%). Trauma increased as a reason for pediatric enrollment. Nonmetro geographies are less likely to provide services for children. The pediatric palliative average annual census was 271, and the pediatric hospice average annual census was 74. The pediatric patient's average length of stay for palliative care was 154 days and for hospice was 96 days. Medicaid (47%) is the most common form of reimbursement. Lack of trained personnel, low referrals, and funding were depicted as the most common barriers. Conclusions: Children remain underrepresented in the extension of care offered through community-based hospice organizations, with the gap widening in nonmetro settings. Further research into training, staffing, and funding models may improve care reach.

Suicide by patients can cause significant distress for the palliative care team. This includes feelings of guilt and self-blame which affect both staff morale and mental well-being, which if left unaddressed, can eventually lead to burnout. We report the case of a patient suicide and how our organization implemented a framework to guide and support staff through this process. The HEAL framework comprises 4 components: honoring the loss of the patient, encouraging self-care and organizational support, affirming the individual and team's sense of meaning and purpose, and learning lessons from the patient's suicide.

Introduction: Interhospital transfer (IHT) can be lifesaving but is associated with longer length of stay, higher costs, and increased inpatient mortality. Little is known about communication and decision-making processes surrounding IHT. Methods: We conducted semi-structured interviews with the surrogate decision-makers of 32 patients who died after IHT, examining perspectives on end-of-life preparations and their impact on the transfer decision-making process and surrogate coping. Results: Several themes emerged surrounding the role of end-of-life planning in IHT: (1) although end-of-life (EOL) planning practices were heterogeneous, respondents reported limited direct insight into transfer preferences; (2) surrogates extrapolated from information about other EOL care preferences to guide transfer decision-making; and (3) serious illness communication and advance care planning (ACP) played a role in surrogate coping. Conclusion: IHT is often not treated as a preference-sensitive decision; however, there is likely a role for improvements in ACP conversations to guide patients and families through goal-concordant transfer decision-making.