Palliative Medicine最新文献

{"title":"Translation and cross-cultural adaptation of Integrated Palliative Care Outcome Scale for Dementia.","authors":"Linghui Chen, Katherine E Sleeman, Huichan Huang, Yihan Mo, Andy Bradshaw, Clare Ellis-Smith","doi":"10.1177/02692163251347826","DOIUrl":"10.1177/02692163251347826","url":null,"abstract":"<p><strong>Background: </strong>The Integrated Palliative Care Outcome Scale for Dementia (IPOS-Dem) was developed to assess symptoms and concerns comprehensively for people with dementia. There is a high demand for comprehensive assessment of people with dementia in China.</p><p><strong>Aim: </strong>To translate and culturally adapt the IPOS-Dem into Chinese.</p><p><strong>Design: </strong>Conceptual equivalence, forward and backward translations, and expert review were performed to develop a prototype Chinese version. Two rounds of cognitive interviews were conducted to ensure the items and scoring format were clearly expressed in the Chinese version.</p><p><strong>Setting/participants: </strong>Professionals, including a physician, a nurse, a linguistic researcher and a humanities researcher, were involved in the prototype Chinese version development. A purposive sample of 12 health care professionals working in three Chinese nursing homes participated in the cognitive interviewing.</p><p><strong>Results: </strong>The Chinese version was perceived as clinically useful. Challenges arose regarding comprehension of some items due to difficulties in translating the precise meanings. These included 'Drowsiness (sleepiness)', 'Difficulty communicating' and 'Do you think s/he felt at peace?'. Considering how a symptom affects an individual presented was also challenging for respondents, as they needed to judge whether the symptom was present and/or causing distress. Selecting the appropriate term to name the measure elucidated the current understanding of dementia and palliative care in China, both of which remain poorly understood.</p><p><strong>Conclusion: </strong>This study highlighted the importance of cultural adaptation in conveying meanings across cultures. Most items were translatable and conceptually equivalent. The term 'at peace' and the concept of 'being affected' generated the most challenges in comprehension and judgement.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"2692163251347826"},"PeriodicalIF":3.6,"publicationDate":"2025-07-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144619712","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Corrigendum to \"McGlinchey T, Mason S, Skorpen Iversen G, et al. iLIVE volunteer study: Volunteer and healthcare professional perceptions of newly developed hospital end-of-life-care volunteer services, in five countries. <i>Palliative Medicine</i>. 2025;0(0). doi:10.1177/02692163251328197\".","authors":"","doi":"10.1177/02692163251360181","DOIUrl":"https://doi.org/10.1177/02692163251360181","url":null,"abstract":"","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"2692163251360181"},"PeriodicalIF":3.6,"publicationDate":"2025-07-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144619711","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Perceptions and interests of cannabis use among patients with cancer: A cross-sectional survey.","authors":"Lara Eldering, Isabelle Kiew, Wei Lee, Davinia Seah, Richard Chye","doi":"10.1177/02692163251351550","DOIUrl":"https://doi.org/10.1177/02692163251351550","url":null,"abstract":"<p><strong>Background: </strong>Cannabis is the most commonly used illicit drug worldwide. Although evidence for its medicinal use is limited, interest in medicinal cannabis is increasing. There is little understanding of cannabis use and attitudes among patients with cancer.</p><p><strong>Aim: </strong>To characterise the perception and practices of patients with cancer towards cannabis use, including information sources, reasons for use, perceived safety and comfort discussing cannabis use with their oncologists.</p><p><strong>Design: </strong>Single site, anonymous survey based cross-sectional cohort study.</p><p><strong>Setting/participants: </strong>Adult patients with cancer from a metropolitan hospital were recruited via consecutive sampling from oncology outpatient clinics between November 2020 and November 2021.</p><p><strong>Results: </strong>Of 272 respondents (84% response rate), 60% (<i>n</i> = 157) were greater than 61 years of age and 56% (<i>n</i> = 146) identified as male. The principal source of information regarding cannabis use was the internet and media (<i>n</i> = 95; 39%). The main reported reason for interest was to improve the side effects of cancer treatments (<i>n</i> = 135; 71%). Of the 27 cannabis users who responded, 90% perceived cannabis as safe. Among non-cannabis users, 73% (<i>n</i> = 159) were interested in cannabis use. 19% (<i>n</i> = 40) of non-cannabis users did not feel comfortable asking their oncologist about cannabis use and 42% (<i>n</i> = 13) of cannabis users did not inform their oncologists of their use.</p><p><strong>Conclusions: </strong>There is great interest and positive attitudes towards cannabis use among patients with cancer. Health professionals should be proactive in discussing cannabis use as patients may seek information about cannabis elsewhere.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"2692163251351550"},"PeriodicalIF":3.6,"publicationDate":"2025-07-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144601184","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Reducing unnecessary hospital admissions for end-of-life patients in lower and middle-income countries.","authors":"Ian Basil Kibet, Mteeve Brian Amugune, Grace Wanjiku Macharia","doi":"10.1177/02692163251353010","DOIUrl":"https://doi.org/10.1177/02692163251353010","url":null,"abstract":"","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"2692163251353010"},"PeriodicalIF":3.6,"publicationDate":"2025-07-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144591952","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Enhancing the wellbeing of refugees living with advanced life-limiting illness in high-income resettlement countries: A systematic review.","authors":"Merrington H, Mahimbo A, DiGiacomo M, Roxas-Harris B, Agar Mr, Nathan S, Hayen A, Heywood Ae, Dawson A","doi":"10.1177/02692163251338583","DOIUrl":"10.1177/02692163251338583","url":null,"abstract":"<p><strong>Background: </strong>Refugees experience barriers to health care after resettlement and may have distinct palliative care needs. There is no systematic guidance to support person-centred palliative care services that are responsive to refugees' needs and preferences.</p><p><strong>Aim: </strong>To synthesis evidence regarding factors enhancing the wellbeing of refugees with advanced life-limiting illness, and their families, to inform palliative care in high-income resettlement countries.</p><p><strong>Design: </strong>A systematic review of primary research studies. We applied a strength-based assets framework to the data extraction and synthesis and conducted a directed content analysis.</p><p><strong>Data sources: </strong>We searched nine electronic databases.</p><p><strong>Results: </strong>Ten of the 1006 studies identified were included in the review: two qualitative, one quantitative and seven case studies. We identified 17 assets that enhanced refugees' wellbeing: resilience, religion, spirituality, sense of identity, belonging, community connections, health and death literacy, acculturation, family and social support, social capital, community structures, access to funeral information, access to services, palliative care service approaches, and workforce capacity. Resilience was linked to identity and belonging, connections within cultural and religious networks, social capital and creating meaningful funeral rituals in resettlement. Palliative care workforce capacity, death literacy, acculturation, refugees' grief experiences and willingness to discuss and plan for death, influenced refugees' attitudes to palliative care, communication with staff about treatment, prognosis and spiritual care, and care outcomes.</p><p><strong>Conclusions: </strong>Further research, co-designed with diverse refugee groups, is needed to inform palliative care service approaches, develop interventions to strengthen key assets and explore the nuanced role of social capital in end-of-life care.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"750-764"},"PeriodicalIF":3.6,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12227814/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144294715","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"End-of-life care experiences and long-term outcomes of bereaved neuro-oncology caregivers: A cross-sectional survey.","authors":"Shaista Meer, Peter Buckle, Rosanna Miller, Louise Murray, Lucy Ziegler, Karin Piil, Florien Boele","doi":"10.1177/02692163251344164","DOIUrl":"10.1177/02692163251344164","url":null,"abstract":"<p><strong>Background: </strong>The last three months of life (end-of-life phase) are profoundly challenging for patients with brain tumours and their family caregivers. Post-bereavement outcomes are largely unknown.</p><p><strong>Aim: </strong>To better understand long-term outcomes of a brain tumour diagnosis on families, we aimed to describe caregiver experiences during the end-of-life phase and beyond.</p><p><strong>Design: </strong>In this sequential mixed-methods study designed together with bereaved caregivers, we used an online survey. This comprised end-of-life experiences, and post-bereavement outcomes (family functioning: Family APGAR; resilience: CD-RISC-10; mood: HADS; prolonged grief: PG-13-R; post-traumatic stress: TSQ).</p><p><strong>Setting/participants: </strong>Caregivers of patients with brain tumours who were bereaved ⩾6 months ago were invited through social media and charities.</p><p><strong>Results: </strong>105 bereaved neuro-oncology caregivers participated. The end-of-life phase was marked by high symptom burden and disruption to family life, compounded by often unsatisfactory information provision and support. Forty-three percent did not describe the patient's death as dignified. Most caregivers were not well-supported post-bereavement, and current functioning was impacted by notable rates of prolonged grief disorder (64%), post-traumatic stress disorder (42%), depression (35%), anxiety (61%), disruption to family life (53%) and low levels of resilience. Multivariable regressions found better resilience and family functioning to be protective factors for both post-traumatic stress disorder and prolonged grief disorder symptoms, with a dignified death additionally linked to caregivers' prolonged grief scores, explaining 23.8% and 51.0% of variance, respectively.</p><p><strong>Conclusions: </strong>Bereaved neuro-oncology caregivers have high rates of adverse mental health outcomes, highlighting a pressing need for improvements in palliative, end-of-life and post-bereavement services.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"814-826"},"PeriodicalIF":3.6,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12227823/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144294714","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Evaluating the measurement properties of patient-reported outcome measures for young adults with life-limiting conditions: A systematic review.","authors":"Rachel L Chambers, Mevhibe B Hocaoglu, Irene J Higginson, Katherine E Sleeman, Lorna K Fraser","doi":"10.1177/02692163251340175","DOIUrl":"10.1177/02692163251340175","url":null,"abstract":"<p><strong>Background: </strong>The number of young adults living with life-limiting conditions is increasing. This population requires palliative care responsive to their needs and preferences.</p><p><strong>Aim: </strong>To identify patient reported outcome measures developed, adapted and validated to assess the health outcomes of young adults (aged 18-25 years) living with life-limiting conditions. To examine their measurement properties and identify the most comprehensive, valid and reliable measures.</p><p><strong>Design: </strong>A systematic review and evaluation of measurement properties. PROSPERO ID (CRD42023443273).</p><p><strong>Data sources: </strong>MEDLINE; EMBASE; CINAHL; PsycInfo; AMED and Cochrane Library from inception to 03/07/2023. Searches were emented by hand-searching references.</p><p><strong>Results: </strong>Four thousand nine hundred twenty-two papers were identified. Five hundred and fifty-six full texts were assessed for eligibility. Thirty-five papers reporting 68 patient reported outcome measures were included. Most studies recruited young adults living with cancer (<i>n</i> = 29/35), we did not identify any studies with young adults living with complex neurodisability. Most measures (<i>n</i> = 61/68) were existing paediatric or adult patient reported outcome measures. Seven (<i>n</i> = 7/68) were young adult measures. Most were two-dimensional. The most assessed measurement properties were internal consistency, construct validity and structural validity. None of the measures were recommended for use as they did not meet sufficient criteria for content validity and internal consistency.</p><p><strong>Conclusion: </strong>There is a lack of multi-dimensional patient reported outcome measures for young adults living with life-limiting conditions, especially for non-cancerous conditions. Future studies may identify existing holistic measures developed for children or adults and adapt them for use with young adults. Studies should ask young adults and professionals about the relevance, comprehensiveness and comprehensibility of items.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"765-791"},"PeriodicalIF":3.6,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12227827/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144326500","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Reducing inequity in the provision of children's palliative care in low- and middle- income countries: A focus on education and research.","authors":"Julia Downing, Tracey Brand, Alex Daniels, Joe El-Khoury, Nahla Gafer, Gayatri Palat, Olena Riga, Regina Szylit, Ximena Garcia-Quintero","doi":"10.1177/02692163251348091","DOIUrl":"10.1177/02692163251348091","url":null,"abstract":"","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"730-733"},"PeriodicalIF":3.6,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144275578","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Disparity in health care in end-of-life among patients with lung cancer and pre-existing mental disorders: A nationwide cohort study.","authors":"Nina Marie Videbech, Jan Brink Valentin, Søren Valgreen Knudsen, Anne Høy Seeman Vestergaard, Mogens Vestergaard, Torben Riis Rasmussen, Line Stjernholm Tipsmark, Søren Paaske Johnsen, Mette Asbjørn Neergaard, Amalie Helme Simoni","doi":"10.1177/02692163251344133","DOIUrl":"10.1177/02692163251344133","url":null,"abstract":"<p><strong>Background: </strong>Research focusing on health care in end-of-life among cancer patients with mental disorders is limited and presents inconsistent findings.</p><p><strong>Aim: </strong>To investigate disparities in health care in end-of-life among patients who died from lung cancer according to pre-existing mental disorders.</p><p><strong>Design: </strong>A Danish nationwide cohort study linking nationwide registries on health care in end-of-life including specialist palliative care (including hospice admissions), 'drug reimbursement for terminal illness', high-intensity-treatment during the last 30 days before death and death at hospital, analysed using Poisson regression, adjusted for sociodemographic and clinical factors.</p><p><strong>Setting/participants: </strong>All adult decedents who died of lung cancer in Denmark from 2011 through 2020, including individuals with mental diagnoses prior to their cancer diagnosis.</p><p><strong>Results: </strong>Among 36,323 patients dying from lung cancer, 12% had pre-existing mental disorders. Patients with mental disorders were less likely to receive specialist palliative care (adjusted risk ratio (RR) 0.90; 95% CI: 0.87; 0.94), hospice admissions (RR: 0.86; 95% CI: 0.80; 0.94), chemotherapy (RR: 0.66; 95% CI: 0.57; 0.76), radiotherapy (RR: 0.82; 95% CI: 0.74; 0.92), surgery (RR: 0.47; 95% CI: 0.22; 1.00), hospital admissions (RR: 0.96; 95% CI: 0.92; 0.99) and to die in a hospital (RR: 0.88; 95% CI: 0.85; 0.91), compared to patients without mental disorders. No disparities were observed in receiving drug reimbursement, admissions to intensive care units or emergency care.</p><p><strong>Conclusion: </strong>Pre-existing mental disorders were associated with a lower probability of specialist palliative care, but also some high-intensity-treatments in end-of-life. These patients may be deprived of optimal palliative care but also appeared less subjected to possible overtreatment in end-of-life compared to patients without mental disorders.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"803-813"},"PeriodicalIF":3.6,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144294713","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Identifying aspects of physiotherapy and occupational therapy provision in community palliative rehabilitation that could improve outcomes: A realist review.","authors":"Jane Manson, Paul Taylor, Susan Mawson, Joanne Bayly, Carol Keen, Jacqui Gath, Tracy Green, Frances Anderson, Rob Smith, Alicia O'Cathain","doi":"10.1177/02692163251331166","DOIUrl":"10.1177/02692163251331166","url":null,"abstract":"<p><strong>Background: </strong>The provision of physiotherapy and occupational therapy in palliative care is often poorly understood. There is currently no guidance on how to deliver these services in the community, potentially leading to unwarranted variation in practice and unmet patient need.</p><p><strong>Aim: </strong>To identify aspects of physiotherapy and occupational therapy provision in community palliative rehabilitation that could improve outcomes.</p><p><strong>Design: </strong>A realist review of the literature following RAMESES standards, with stakeholder input throughout.</p><p><strong>Data sources: </strong>Iterative literature searches were conducted from September 2023 to April 2024. All relevant data sources relating to delivery of physiotherapy and occupational therapy in community palliative care were included.</p><p><strong>Results: </strong>Forty-two international publications were included, published between 2000 and 2023. Five key aspects were identified: (1) Early referral into community palliative rehabilitation. (2) Layered model, basing level of service on complexity of needs. Within this, clinicians without professional qualifications deliver simple interventions after assessment by a qualified physiotherapist or occupational therapist while specialist clinicians review more complex presentations. Services are cohesive by being integrated with primary care, other community services and specialist medical and palliative care and there is representation of physiotherapists and occupational therapists within leadership teams. (3) Holistic assessments form the backbone of the service with personalised interventions tailored to patients' needs and goals. (4) Accessible and flexible services are offered to meet patients' needs throughout their palliative journey. (5) Information and education for patients and carers are available throughout.</p><p><strong>Conclusions: </strong>Integrating these five key aspects of physiotherapy and occupational therapy provision into community palliative rehabilitation could help ensure palliative patients receive the therapy they need.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"734-749"},"PeriodicalIF":3.6,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12227828/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144024116","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}