Palliative & Supportive Care最新文献

{"title":"Trends and disparities in place of death among patients with cholangiocarcinoma: A two-decade analysis.","authors":"Imran Qureshi, Charmi Patel, Steven Rella, Evan Botterman, Yazan Abboud, Ritik Goyal, Kaveh Hajifathalian, Paul Gaglio, Ahmed Al-Khazraji","doi":"10.1017/S147895152510031X","DOIUrl":"10.1017/S147895152510031X","url":null,"abstract":"<p><strong>Objectives: </strong>Cholangiocarcinoma (CCA) is the second most lethal primary hepatic malignancy. It has been well-reported that most cancer patients prefer to die at home or in a hospice facility. However, there is limited data on the place of death for CCA patients. We evaluated trends and disparities in place of death for patients with CCA from 1999 to 2020.</p><p><strong>Methods: </strong>Using the CDC WONDER database (1999-2020), we calculated the frequency of CCA deaths at home/hospice and the average annual percentage change (AAPC) over this period stratified by race, age, gender, and region. We employed logistic regression to assess for associations between these variables and place of death for patients whose death was attributed to CCA.</p><p><strong>Results: </strong>Among 140,422 deaths, a rise in deaths occurred in home/hospice facilities compared to inpatient medical or nursing facilities across all variables examined. Blacks and individuals ≥ 85 had the highest proportion of deaths outside of home/hospice. However, Blacks showed the highest AAPC (8.56%) in home/hospice deaths, followed by Asians (AAPC 8.44%). In contrast, individuals aged 45-54 saw the lowest AAPC (4.27%). Non-whites were less likely to die at home/hospice, with Blacks demonstrating the lowest adjusted odds ratio (aOR 0.64). Those ≥ 85 were less likely to die in home/hospice (aOR 0.78), whereas individuals aged between 55-64 (aOR 1.11) and 65-74 (aOR 1.12) had increased odds of dying in these settings. Patients from the Western region were the most likely to die at home/hospice (aOR 1.04).</p><p><strong>Significance of results: </strong>Our study highlights disparities in place of death of patients with CCA amongst races, regions, and ages. Non-whites, extremes of ages, and patients from the Northeast have disproportionately poor outcomes in terms of end-of-life care in the US. These findings emphasize the need for efforts to address sociodemographic disparities in end-of-life care to improve patient-centered health outcomes.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e122"},"PeriodicalIF":1.9,"publicationDate":"2025-06-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144334205","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Legacy of dignity: Words that are also mine.","authors":"Bianca Sakamoto Ribeiro Paiva","doi":"10.1017/S1478951525100266","DOIUrl":"10.1017/S1478951525100266","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e119"},"PeriodicalIF":1.9,"publicationDate":"2025-06-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144334203","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Acknowledging existential moments and meaning-making in palliative care: A hermeneutic study of physicians' experience.","authors":"Martina Ann Kelly, Ellen McLeod","doi":"10.1017/S1478951525100230","DOIUrl":"10.1017/S1478951525100230","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e120"},"PeriodicalIF":1.9,"publicationDate":"2025-06-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144334202","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Pitfalls in the conceptualization of primary palliative care and the WHO public palliative care framework.","authors":"Juan Esteban Correa-Morales, Rebecca Newell, Libby Sallnow","doi":"10.1017/S1478951525100229","DOIUrl":"https://doi.org/10.1017/S1478951525100229","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e118"},"PeriodicalIF":1.9,"publicationDate":"2025-06-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144303318","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"SAHD-10: Development and initial validation of a short version of the Schedule of Attitudes Toward Hastened Death based on a large multinational sample - CORRIGENDUM.","authors":"Kerstin Kremeike, Kathleen Boström, Thomas Dojan, Cristina Monforte-Royo, Barry Rosenfeld, Raymond Voltz, Christian Rietz, Julia Strupp","doi":"10.1017/S1478951525000410","DOIUrl":"10.1017/S1478951525000410","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e112"},"PeriodicalIF":1.9,"publicationDate":"2025-06-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144250316","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Situations in which caregivers and patients are likely to collude: Perspectives from caregivers of advanced cancer patients in Bangladesh- ERRATUM.","authors":"Jheelam Biswas, Salma Ahsan Khanam, Md Shamsudduha Tauhid, Shima Rani Sarker, Nahid Afsar, Nashid Islam","doi":"10.1017/S1478951525000380","DOIUrl":"10.1017/S1478951525000380","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e109"},"PeriodicalIF":1.9,"publicationDate":"2025-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144227275","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Cross-cultural validation of the integrated palliative outcome scale for neurological patients (IPOS-Neuro S8) in multiple sclerosis patients.","authors":"Kim Dillen, Wiebke Müller, Martin Hellmich, Yasemin Goereci, Veronika Dunkl, Anne Dorr, Gereon R Fink, Raymond Voltz, Mevhibe Hocaoglu, Clemens Warnke, Heidrun Golla","doi":"10.1017/S1478951525000392","DOIUrl":"https://doi.org/10.1017/S1478951525000392","url":null,"abstract":"<p><strong>Objectives: </strong>Standardized measures to evaluate neurological patients in palliative care are missing. The Integrated Palliative Outcome Scale, a self-report tailored for neurological patients (IPOS Neuro-S8) helps identify symptom burden but lacks validation in German. This study aimed to validate the IPOS Neuro-S8 in severely affected multiple sclerosis (MS) patients.</p><p><strong>Methods: </strong>This validation study is a secondary analysis of data from a clinical phase II intervention study with severely affected MS patients. The original study enrolled German-speaking patients aged 18 with severe MS who receive an escalating immunotherapeutic agent and/or exhibit a high level of disability were recruited from the administrative district Cologne (#DRKS00021783). In this validation study, we evaluated construct, discriminant, and convergent validity, internal consistency, test-retest reliability, and sensitivity to change of the IPOS Neuro-S8, using the \"Hamburger Lebensqualitätsmessinstrument\" (HALEMS), and the Hospice and Palliative Care Evaluation supplemented by neurological symptoms (HOPE+) as comparison measures.</p><p><strong>Results: </strong>Data from 80 MS patients (mean age 56, SD = 11) were analyzed. Exploratory and confirmatory factor analyses revealed a 3-factor structure (<i>r</i> = 0.34-0.63), reflecting distinct clinical patterns, i.e., <i>breath-mouth connection, pain-sleep cycle</i>, and <i>nausea-vomiting link</i>. Significant convergent validity to hypothesized total score of the HOPE+ (<i>r_s</i>(78) = 0.71, <i>p</i> < 0.001) and good discriminant validity using the HALEMS total score (<i>r_s</i>(78) = 0.48, <i>p</i> < 0.001) were observed. Correlation with physical symptoms of the HALEMS was stronger than with nonphysical aspects. Internal consistency (Cronbach's α = 0.67) and test-retest reliability (intraclass coefficient = 0.75) were acceptable.</p><p><strong>Significance of results: </strong>IPOS Neuro-S8 displays promising psychometric properties for assessing palliative care symptoms in severe MS, a model for other severe neurological diseases due to MS's broad central nervous involvement, allowing findings to be transferable to other neurological diseases. A criterion for minimal clinically important difference was established to evaluate the sensitivity to change. Additional validation across different neurological conditions and disease severities is warranted to enhance generalizability and clinical utility.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e110"},"PeriodicalIF":1.9,"publicationDate":"2025-06-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144209913","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Narrative review of the impact on physicians of administering euthanasia or physician-assisted suicide and its association with moral distress.","authors":"Priyanka Pinto, Gerald Blaise Fogarty, David Kissane","doi":"10.1017/S1478951525000240","DOIUrl":"https://doi.org/10.1017/S1478951525000240","url":null,"abstract":"<p><strong>Background: </strong>Moral distress affects a significant proportion of clinicians who have received requests and participated in euthanasia or physician-assisted suicide (E/PAS) globally. It has been reported that personal and professional support needs are often unaddressed, with only a minority of those reporting adverse impacts seeking support.</p><p><strong>Objectives: </strong>This study aimed to review studies from 2017 to 2023 for the perceived risks, harms, and benefits to doctors of administering E/PAS and the ethical implications for the profession of medicine resulting from this practice.</p><p><strong>Methods: </strong>The search explored original research papers published in peer-reviewed English language literature between June 2017 and December 2023 to extend prior reviews. This included both studies reporting quantitative and qualitative data, with a specific focus on the impact on, or response from, physicians to their participation in E/PAS. The quantitative review was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA). The qualitative review used the Critical Appraisal Skills Programme to assess whether studies were valid, reliable, and trustworthy.</p><p><strong>Results: </strong>Thirty studies (quantitative <i>n</i> = 5, qualitative <i>n</i> = 22, mixed methods <i>n</i> = 3) were identified and fulfilled acceptable research assessment criteria. The following 5 themes arose from the synthesis of qualitative studies: (1) experience of the request prior to administration; (2) the doctor's role and agency in the death of a patient; (3) moral distress post-administration; (4) workload and burnout; and (5) professional guidance and support. Both quantitative and qualitative studies showed a significant proportion of clinicians (45.8-80%) have been adversely affected by their involvement in E/PAS, with only a minority of those reporting adverse impacts seeking support.</p><p><strong>Significance of results: </strong>Participation in E/PAS can reward some and cause moral distress in others. For many clinicians, this can include significant adverse personal and professional consequences, thereby impacting the medical profession as a whole.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e115"},"PeriodicalIF":1.9,"publicationDate":"2025-06-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144209914","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Asymmetric facial edema with transdermal fentanyl: when listening to patients and caregivers helps to diagnose - ERRATUM.","authors":"Carolina Simões, Miguel Julião, Patrícia Calaveiras, Paula Câmara, Eduardo Bruera","doi":"10.1017/S1478951525000379","DOIUrl":"10.1017/S1478951525000379","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e114"},"PeriodicalIF":1.9,"publicationDate":"2025-06-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144209912","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The role of spiritual care management - Needs and resources in people with amyotrophic lateral sclerosis: Insights from a mixed-methods study.","authors":"Filipe Gonçalves, Margarida I Teixeira, Francisca Rego, Bruno Magalhães","doi":"10.1017/S1478951525000495","DOIUrl":"https://doi.org/10.1017/S1478951525000495","url":null,"abstract":"<p><strong>Objectives: </strong>To explore the spiritual needs and resources of People with Amyotrophic Lateral Sclerosis (PALS) at different stages of its trajectory and to characterize the experiences of the current state of the disease.</p><p><strong>Methods: </strong>A convergent mixed-methods study was conducted using qualitative and quantitative approaches. Participants were assessed using the clinical and sociodemographic data, ALSFRS-R (function assessment), and the GES Questionnaire to evaluate spiritual needs and resources. Data were collected through in-person or online interviews, transcribed and coded. The qualitative analysis was based on the content analysis method. Statistical analysis was performed using SPSS software. Both datasets were integrated during data analysis.</p><p><strong>Results: </strong>Twenty-four patients were interviewed, with a duration of the illness ranging from 1 year to 12 years. Participants were at different stages of functional dependence. Analyzing the open questions of the GES questionnaire, six categories were established related to the inner world of PALS: <i>Concern, Nuisance, Help, Support, Safety</i>, and <i>Valorization</i>. Contrary to what was hypothesized, no correlations were found between functionality and the spiritual dimensions. Spiritual needs and resources tend to vary with age, with younger ages presenting a more fragile spiritual dimension overall. Also, the intrapersonal and interpersonal dimension seems to play a central role in the lives of PALS. A negative correlation was identified between the feeling of connection to a supreme/transcendent reality and the level of educational qualifications.</p><p><strong>Significance of results: </strong>Spirituality often provides crucial emotional support, meaning, and resilience during challenging times. Despite its importance, it is often overlooked in clinical settings. The study emphasizes the need for personalized, holistic care, which should include spiritual care support, regardless of the functional state, highlighting the importance of addressing both intrapersonal and interpersonal domains, resources and needs from early phases. Allowing to create a structured care plan that meets patients' individual spiritual needs, that can contribute to a better QoL and reduce suffering.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":"23 ","pages":"e111"},"PeriodicalIF":1.9,"publicationDate":"2025-05-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144182876","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}