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Chinese physicians' experiences with end-of-life communication and hospice care transition: a qualitative study with content analysis. 中国医师临终沟通与安宁疗护转型经验:质性研究与内容分析。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-11-07 DOI: 10.1186/s12904-025-01924-x
Jie Zhong, Wenjuan Zhao, Xiaobin Lai

Background: Mainland China's end-of-life care system remained underdeveloped marked by underutilization of hospice care services. Physicians-initiated end-of-life communication is likely to result in immediate enrollment in hospice care. However, there is a lack of empirical evidence on how physicians in China undertake end-of-life communication in advanced cancer. This qualitative study aimed to explore physicians' experiences on discussing end-of-life matters and facilitating hospice care transition within families of patients with advanced cancer.

Methods: A descriptive qualitative study was conducted. Using the purpose sampling, physicians were recruited from 8 hospitals in Shanghai, China. Physicians were eligible if they had experiences in treating patients with advanced cancer and were ineligible if they did not directly participate in end-of-life discussions with patients/families. Semi-structured interviews were conducted from August 2022 to February 2023. Qualitative data were analyzed by content analysis approach.

Results: Among 18 physicians, three major themes emerged regarding barriers to effective end-of-life communication at physician, family, and system levels: (1) Physician avoidance in disclosing terminal prognosis: Prognostic uncertainty, Skill deficiency, Emotional burden, Concerns about therapeutic hope, and Systematic avoidance; (2) Family priority in end-of-life decision-making: Complex family dynamics, Cultural stigma, and Unstructured family coping; (3) Systematic fragmentation in hospice care integration: Limited awareness and understanding, Ineffective referral mechanisms, and Insufficient leadership support.

Conclusion: End-of-life communication in Shanghai is hindered by physician challenges, cultural norms favoring family decisions, and systemic gaps. Targeted training for non-hospice physicians, balanced approaches to patient autonomy and family roles, and strengthened referral/reimbursement policies are needed to improve hospice transitions.

背景:中国大陆的临终关怀制度仍然不发达,临终关怀服务的利用不足。由医生发起的临终沟通很可能导致患者立即加入临终关怀。然而,关于中国医生如何在晚期癌症患者中进行临终沟通,缺乏经验证据。本质性研究旨在探讨医师在讨论晚期癌症患者家属临终事宜及促进安宁疗护过渡方面的经验。方法:采用描述性定性研究。采用目的抽样,从中国上海的8家医院招募医生。如果医生有治疗晚期癌症患者的经验,那么他们就有资格,如果他们没有直接参与与患者/家属的临终讨论,那么他们就没有资格。半结构化访谈于2022年8月至2023年2月进行。定性资料采用内容分析法进行分析。结果:在18名医生中,在医生、家庭和系统层面出现了关于有效的临终沟通障碍的三个主要主题:(1)医生回避披露临终预后:预后不确定性、技能不足、情绪负担、对治疗希望的担忧和系统性回避;(2)家庭在临终决策中的优先地位:复杂的家庭动态、文化污名和非结构化的家庭应对;(3)安宁疗护整合的系统碎片化:认知与理解有限、转诊机制无效、领导支持不足。结论:上海临终沟通受到医师挑战、倾向于家庭决定的文化规范和体制差距的阻碍。对非安宁疗护医师进行有针对性的训练、平衡病患自主与家庭角色的方法,以及强化转诊/报销政策,都需要改善安宁疗护转型。
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引用次数: 0
Choices and challenges in end-of-life care and decision-making: a nationwide cross-sectional study in Bangladesh. 临终关怀和决策中的选择和挑战:孟加拉国全国横断面研究。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-11-07 DOI: 10.1186/s12904-025-01926-9
Md Monir Hossain Shimul, Israt Jahan Dowel, Pujita Roy, Abu Sufian, Tanvir R Ahmed, Deepta Majumder, Md Kamrul Hossain, Salamat Khandker, Salim Khan, Hafiz T A Khan
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引用次数: 0
Supporting infants with severe perinatal diagnoses, their families and healthcare providers: development of a perinatal palliative care program. 支持患有严重围产期诊断的婴儿及其家庭和医疗保健提供者:围产期姑息治疗方案的制定。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-11-05 DOI: 10.1186/s12904-025-01923-y
Laure Dombrecht, Ellen Roets, Filip Cools, Kristien Roelens, Eve Van den Mooter, Linde Goossens, Kenneth Chambaere, Kim Beernaert

Background: Perinatal palliative care (PPC) provides essential support for families and healthcare providers at the end-of-life. Despite clear global need, structured PPC programs are not widely established.

Aim: To develop a PPC program that supports families confronted with a severe perinatal diagnosis for their (unborn) child, with a focus on evidence-based development of such program, ensuring care is effective, consistent, and aligned with best practices.

Methods: We systematically designed a PPC program following a 7-step method, using Bleijenberg's extended Medical Research Council framework. We conducted a qualitative interview study with 22 healthcare providers and 18 bereaved parents from six hospitals to identify care gaps alongside an integrative review study of international programs. These combined findings informed the development of a PPC prototype program, intended to be integrated in routine practice. Subsequently, we refined the program, identified barriers to implementation, and explored opportunities for contextual tailoring through six participatory workshops involving both healthcare providers and bereaved parents at three hospitals. In these sessions we reviewed the preliminary care components, identified practical challenges, and adapted the model to align with local workflows, staffing realities, and documentation systems.

Results: Five core components were developed: 1. Dedicated fixed PPC Team with care coordinators 2. Formal/Specialized 1,5 day training covering essential PPC aspects 3. Stepwise PPC Approach with a structured PPC plan including individualized care pathways and centralized resources and information sharing 4. Proactive psychological support for both families and staff 5. Structured Team Debriefings Key barriers to implementation included fragmented documentation systems, limited staffing and time resources, and challenges in cross-departmental coordination.

Discussion: We developed a PPC program based on existing international evidence and current PPC practices. This approach ensured both relevance and practical applicability. The program design is a strength, as it is grounded in evidence and shaped through active involvement of parents and healthcare providers, with attention to contextual tailoring. The program is now ready for pilot testing to assess feasibility and acceptability in clinical practice. Future implementation will require institutional support, contextual adaptation, and ongoing evaluation to ensure sustainable integration into perinatal care.

背景:围产期姑息治疗(PPC)提供必要的支持,家庭和医疗保健提供者在生命末期。尽管有明确的全球需求,但结构化的PPC计划并未广泛建立。目的:制定PPC计划,支持面临严重围产期诊断(未出生)孩子的家庭,重点是基于证据的计划发展,确保护理是有效的,一致的,并符合最佳做法。方法:采用Bleijenberg扩展的医学研究委员会框架,按照7步法系统地设计了PPC计划。我们对来自6家医院的22名医疗服务提供者和18名丧亲父母进行了定性访谈研究,以确定护理差距以及国际项目的综合回顾研究。这些综合发现为PPC原型程序的开发提供了信息,旨在将其整合到日常实践中。随后,我们改进了该计划,确定了实施的障碍,并通过六次参与式研讨会探讨了根据具体情况量身定制的机会,研讨会涉及三家医院的医疗保健提供者和丧亲父母。在这些会议中,我们回顾了初步护理组成部分,确定了实际挑战,并调整了该模型,使其与当地的工作流程、人员配备情况和文件系统保持一致。结果:开发出5个核心成分:1.;专门的固定PPC团队与护理协调员2。正式/专业培训,为期1.5天,涵盖PPC基本方面逐步PPC方法,采用结构化的PPC计划,包括个性化的护理途径和集中的资源和信息共享。为家属和员工提供积极的心理支持。结构化团队汇报实施的主要障碍包括支离破碎的文档系统、有限的人员和时间资源,以及跨部门协调方面的挑战。讨论:我们根据现有的国际证据和当前的PPC实践制定了一个PPC计划。这种方法确保了相关性和实际适用性。方案设计是一个优势,因为它是基于证据,并通过家长和医疗保健提供者的积极参与形成,并注意上下文定制。该计划现在准备进行试点测试,以评估临床实践的可行性和可接受性。未来的实施将需要机构支持、环境适应和持续评估,以确保可持续地纳入围产期护理。
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引用次数: 0
A validation study of the modified Chinese version of the integrated palliative care outcome scale (IPOS) among patients with advanced illness in Hong Kong. 改良中文版综合姑息治疗结局量表(IPOS)在香港晚期患者中的验证研究
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-11-04 DOI: 10.1186/s12904-025-01910-3
Xun Fang, Amy Yin-Man Chow, Iris Kwan Ning Chan, Victoria Ka-Ying Hui, Richard Harding, Ping Guo
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引用次数: 0
A feasibility trial of advance care planning for patients with terminal cancer in primary hospitals. 基层医院晚期癌症患者提前护理计划可行性研究。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-11-03 DOI: 10.1186/s12904-025-01920-1
Yi Li, Siyan Liang, Liyun Huang, Zhijun Ding

Objective: To investigate the effects of advance care planning (ACP) on patients with terminal cancer in primary hospitals.

Methods: Convenience sampling was used to select 60 patients with terminal cancer and their primary caregivers from primary hospitals. The control group received routine care, while the intervention group received routine care plus an ACP-based care intervention. Patients and their primary caregivers' anxiety and depression levels were assessed before and after the intervention. We compared several outcomes between the ACP intervention and routine care control group, including quality of life scores (EORTC QLQ-C30), frequency of intensive care unit (ICU) admissions, length of hospital stay within 30 days before death, and direct medical costs.

Results: Two weeks post-intervention, caregivers' anxiety and depression were significantly lower in the ACP group than in the control group (P < 0.05). The ACP group also showed significant improvements in quality of life, including role functioning, pain, nausea/vomiting, dyspnea, constipation, diarrhea. At 1 month post-intervention, both patients and caregivers had significantly reduced anxiety/depression in the ACP group (P < 0.05). All quality-of-life dimensions significantly improved with ACP (P < 0.05). There were also significant reductions in ICU admission frequency, length of hospital stay within 30 days before death, and direct medical costs in the ACP group relative to the control group (P < 0.05).

Conclusion: ACP intervention can be successfully implemented for patients with terminal cancer in primary hospitals when clinicians receive structured training and standardized documentation and family engagement protocols are followed. Furthermore, the findings suggest that ACP may help reduce anxiety and depression in patients and their caregivers, improve patients' quality of life, and has the potential to decrease ICU admissions, hospital stay length, and direct medical costs.

目的:探讨基层医院提前护理计划(ACP)对晚期肿瘤患者的影响。方法:采用方便抽样法抽取60例基层医院晚期肿瘤患者及其主要护理人员。对照组采用常规护理,干预组采用常规护理加acp护理干预。在干预前后评估患者及其主要照顾者的焦虑和抑郁水平。我们比较了ACP干预组和常规护理对照组之间的几个结局,包括生活质量评分(EORTC QLQ-C30)、重症监护病房(ICU)入院频率、死亡前30天内住院时间和直接医疗费用。结果:干预后2周,ACP组护理人员的焦虑和抑郁情绪明显低于对照组(P结论:临床医生接受结构化培训,遵循标准化文件和家庭参与协议,ACP干预可以在基层医院成功实施晚期癌症患者。此外,研究结果表明,ACP可能有助于减少患者及其护理人员的焦虑和抑郁,改善患者的生活质量,并有可能减少ICU住院次数、住院时间和直接医疗费用。
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引用次数: 0
Patients' experiences of quality in palliative care and advance care planning in primary care: a qualitative study. 患者对姑息治疗质量的体验与初级保健的预先护理计划:一项质性研究。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-11-03 DOI: 10.1186/s12904-025-01919-8
Liv Skomakerstuen Ødbehr, Aasa Serholt Jensen, Aina Korup, Reidun Hov, Harald Sanaker, Tuva Sandsdalen

Background: Primary healthcare services provide care to patients and their relatives during the late palliative phase in the patients' home or in facilities such as nursing homes. Patients receiving palliative care may be vulnerable due to the total pain of the situation they are facing, which requires great expertise of healthcare professionals in meeting the patients' needs. The aim in this study was to explore patients' experiences of quality in palliative care and advance care planning in primary healthcare services.

Methods: This study has a qualitative design. Five patients in the late palliative phase in primary care from different municipalities in Norway participated. All participants had experiences across both primary and specialist care settings. Individual interviews were conducted between January 2022 and July 2023. The interviews were transcribed verbatim and analysed using content analysis. The study adheres to the checklist of the consolidated criteria for reporting qualitative research.

Results: The findings are described in terms of four main themes: (1) trust in supportive clinicians to ease their future path, (2) perceived quality of palliative care depended on the context, (3) advance care planning helped to tidy up important aspects of life, and (4) personalized family support and involvement eased burdens for patients and relatives.

Conclusion: Patients in late palliative phase and their experiences of palliative care highlight the need for information and support from healthcare professionals, but the organization of primary healthcare settings does not adequately address these needs. A key aspect of quality in care is comprehensive and individualized follow-up throughout the patient's illness trajectory. Another area that affects the quality of palliative care is the communication skills of healthcare professionals. Care plans for the end- of -life were developed through advance care planning, but the quality of implementation varied in home care. A huge concern for patients in the late palliative phase was if and how their relatives received the support they needed.

背景:初级卫生保健服务在患者家中或疗养院等设施中为晚期姑息期患者及其亲属提供护理。患者接受姑息治疗可能是脆弱的,因为他们所面临的情况的全部痛苦,这需要医疗保健专业人员的专业知识,以满足患者的需求。本研究的目的是探讨患者在初级卫生保健服务中对姑息治疗质量和提前护理计划的体验。方法:本研究采用定性设计。来自挪威不同城市的初级保健晚期姑息治疗阶段的5名患者参加了研究。所有参与者都有初级和专科护理的经历。个人访谈在2022年1月至2023年7月期间进行。访谈被逐字记录下来,并使用内容分析进行分析。本研究遵循报告定性研究的综合标准清单。结果:研究结果描述了四个主要主题:(1)对支持临床医生的信任,以缓解他们的未来道路;(2)感知姑息治疗质量取决于环境;(3)预先护理计划有助于整理生活的重要方面;(4)个性化的家庭支持和参与减轻了患者和亲属的负担。结论:晚期姑息期患者及其姑息治疗经历突出了对卫生保健专业人员的信息和支持的需求,但初级卫生保健机构的组织不能充分满足这些需求。护理质量的一个关键方面是在患者的整个疾病轨迹中进行全面和个性化的随访。影响姑息治疗质量的另一个方面是保健专业人员的沟通技巧。临终关怀计划是通过预先护理计划制定的,但在家庭护理中实施的质量各不相同。在晚期姑息治疗阶段,患者最关心的是他们的亲属是否以及如何得到他们所需要的支持。
{"title":"Patients' experiences of quality in palliative care and advance care planning in primary care: a qualitative study.","authors":"Liv Skomakerstuen Ødbehr, Aasa Serholt Jensen, Aina Korup, Reidun Hov, Harald Sanaker, Tuva Sandsdalen","doi":"10.1186/s12904-025-01919-8","DOIUrl":"10.1186/s12904-025-01919-8","url":null,"abstract":"<p><strong>Background: </strong>Primary healthcare services provide care to patients and their relatives during the late palliative phase in the patients' home or in facilities such as nursing homes. Patients receiving palliative care may be vulnerable due to the total pain of the situation they are facing, which requires great expertise of healthcare professionals in meeting the patients' needs. The aim in this study was to explore patients' experiences of quality in palliative care and advance care planning in primary healthcare services.</p><p><strong>Methods: </strong>This study has a qualitative design. Five patients in the late palliative phase in primary care from different municipalities in Norway participated. All participants had experiences across both primary and specialist care settings. Individual interviews were conducted between January 2022 and July 2023. The interviews were transcribed verbatim and analysed using content analysis. The study adheres to the checklist of the consolidated criteria for reporting qualitative research.</p><p><strong>Results: </strong>The findings are described in terms of four main themes: (1) trust in supportive clinicians to ease their future path, (2) perceived quality of palliative care depended on the context, (3) advance care planning helped to tidy up important aspects of life, and (4) personalized family support and involvement eased burdens for patients and relatives.</p><p><strong>Conclusion: </strong>Patients in late palliative phase and their experiences of palliative care highlight the need for information and support from healthcare professionals, but the organization of primary healthcare settings does not adequately address these needs. A key aspect of quality in care is comprehensive and individualized follow-up throughout the patient's illness trajectory. Another area that affects the quality of palliative care is the communication skills of healthcare professionals. Care plans for the end- of -life were developed through advance care planning, but the quality of implementation varied in home care. A huge concern for patients in the late palliative phase was if and how their relatives received the support they needed.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"277"},"PeriodicalIF":2.5,"publicationDate":"2025-11-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12581416/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145439178","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}
引用次数: 0
Holistic symptom burden and prognostic value of palliative care needs in heart failure: insights from the integrated palliative care outcome scale. 心衰患者的整体症状负担和姑息治疗需求的预后价值:来自综合姑息治疗结果量表的见解。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-11-03 DOI: 10.1186/s12904-025-01897-x
Do Thi Hien, Nguyen Thi Kieu Ly, Nguyen Quy Quyen, Le Thanh Ha, Nguyen Thi Hong Nga, To Lan Phuong, Nguyen Thanh Hai, Doan Van Nghia, Do Thi Trang, Pham Truong Son, Nguyen Van Hinh

Introduction: Heart failure (HF) patients experience significant palliative care needs (PCN), which can be assessed using the Integrated Palliative Care Outcome Scale (IPOS). This study evaluates PCN in hospitalized HF patients and their association with patient characteristics and mortality.

Population and methods: A prospective observational study was conducted on 160 hospitalized HF patients in Vietnam. PCN were assessed using IPOS (17 questions, scored 0-4, none to severe). PCN was defined as ≥ 2 items scoring 4 or ≥ 3 items scoring ≥ 3. All-cause mortality was tracked post-discharge.  RESULTS: PCN were identified in 59.4% of patients, with shortness of breath (57.5%), weakness (51.9%), and pain (45.6%) being the most common symptoms at moderate severity. PCN correlated with longer HF duration, lower eGFR, and specific medication use (intravenous drugs, RAAS inhibitors, MRAs). PCN independently predicted higher post-discharge mortality (adjusted HR: 2.63, 95% CI 1.06-6.53, p=0.037).

Conclusion: PCN are prevalent in hospitalized HF patients and independently associated with increased mortality, underscoring the need for routine PCN assessment and early palliative care integration.

心力衰竭(HF)患者具有显著的姑息治疗需求(PCN),可使用综合姑息治疗结局量表(IPOS)进行评估。本研究评估住院HF患者的PCN及其与患者特征和死亡率的关系。人群与方法:对越南住院的160例心衰患者进行了前瞻性观察研究。PCN采用IPOS评估(17个问题,得分0-4,无严重)。PCN定义为≥2项得分为4或≥3项得分≥3。出院后追踪全因死亡率。结果:59.4%的患者存在PCN,其中呼吸短促(57.5%)、虚弱(51.9%)和疼痛(45.6%)是最常见的中度症状。PCN与较长的HF持续时间、较低的eGFR和特定药物使用(静脉注射药物、RAAS抑制剂、MRAs)相关。PCN独立预测较高的出院后死亡率(调整后HR: 2.63, 95% CI 1.06-6.53, p=0.037)。结论:PCN在住院HF患者中普遍存在,并与死亡率增加独立相关,强调了常规PCN评估和早期姑息治疗整合的必要性。
{"title":"Holistic symptom burden and prognostic value of palliative care needs in heart failure: insights from the integrated palliative care outcome scale.","authors":"Do Thi Hien, Nguyen Thi Kieu Ly, Nguyen Quy Quyen, Le Thanh Ha, Nguyen Thi Hong Nga, To Lan Phuong, Nguyen Thanh Hai, Doan Van Nghia, Do Thi Trang, Pham Truong Son, Nguyen Van Hinh","doi":"10.1186/s12904-025-01897-x","DOIUrl":"10.1186/s12904-025-01897-x","url":null,"abstract":"<p><strong>Introduction: </strong>Heart failure (HF) patients experience significant palliative care needs (PCN), which can be assessed using the Integrated Palliative Care Outcome Scale (IPOS). This study evaluates PCN in hospitalized HF patients and their association with patient characteristics and mortality.</p><p><strong>Population and methods: </strong>A prospective observational study was conducted on 160 hospitalized HF patients in Vietnam. PCN were assessed using IPOS (17 questions, scored 0-4, none to severe). PCN was defined as ≥ 2 items scoring 4 or ≥ 3 items scoring ≥ 3. All-cause mortality was tracked post-discharge.  RESULTS: PCN were identified in 59.4% of patients, with shortness of breath (57.5%), weakness (51.9%), and pain (45.6%) being the most common symptoms at moderate severity. PCN correlated with longer HF duration, lower eGFR, and specific medication use (intravenous drugs, RAAS inhibitors, MRAs). PCN independently predicted higher post-discharge mortality (adjusted HR: 2.63, 95% CI 1.06-6.53, p=0.037).</p><p><strong>Conclusion: </strong>PCN are prevalent in hospitalized HF patients and independently associated with increased mortality, underscoring the need for routine PCN assessment and early palliative care integration.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"279"},"PeriodicalIF":2.5,"publicationDate":"2025-11-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12581365/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145439247","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}
引用次数: 0
Toward a comprehensive research agenda: exploring the health economics of palliative care in Australia. 走向一个全面的研究议程:探索澳大利亚姑息治疗的健康经济学。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-10-30 DOI: 10.1186/s12904-025-01867-3
Chris Schilling, Cate Bailey, Katharina Merollini, Alison Giles, Cara Platts, David C Currow, Elise Button, Fiona Runacres, Gregory B Crawford, Gregory Merlo, Jaclyn Yoong, Jennifer Philip, Jennifer Tieman, Meera R Agar, Patsy Yates, Peter Hudson, Vijaya Sundararajan, Hannah Carter, Nikki McCaffrey

Background: Despite significant advances in the availability and quality of palliative care globally, health economics research to understand the value of palliative care in Australian settings remains scarce. To address knowledge gaps and foster evidence-informed policy, funding and practice, this paper presents a consensus-driven research agenda for the health economics of palliative care in Australia.

Methods: A panel of 27 Australian experts was convened, including health economists, palliative care clinicians/researchers, policy makers/government officials, and representatives from the national peak body for palliative care. Panel members completed a survey, participated in a forum and collectively drafted the research agenda.

Results: The panel recommended 16 health economics research priorities across four key areas: (1) person-centred outcomes; (2) costs; (3) economic evaluation; and (4) data and metrics. Specific priorities included: comprehensively capturing the benefits of palliative care for people with life-limiting illnesses and their informal carers; understanding the diversity of preferences for palliative care across the population; capturing informal caring costs within economic evaluations; embedding economic evaluation within clinical trials and health services studies; and quantifying the extent and location of unmet palliative care needs.

Conclusions: This paper outlines high-priority research actions to generate the economic evidence required for appropriate funding and resource allocation in palliative care. The research agenda serves as a strategic tool to help researchers address gaps without duplicating efforts. By focusing on these priorities, we aim to support the development of more effective, equitable and sustainable palliative care services across Australia.

背景:尽管在全球范围内姑息治疗的可得性和质量方面取得了重大进展,但在澳大利亚环境中了解姑息治疗价值的卫生经济学研究仍然很少。为了解决知识差距和促进循证政策,资金和实践,本文提出了一个共识驱动的研究议程,在澳大利亚姑息治疗的卫生经济学。方法:召集了一个由27名澳大利亚专家组成的小组,包括卫生经济学家、姑息治疗临床医生/研究人员、政策制定者/政府官员和国家姑息治疗高峰机构的代表。小组成员完成了一项调查,参加了一个论坛,并集体起草了研究议程。结果:专家组在四个关键领域建议了16项卫生经济学研究重点:(1)以人为本的结果;(2)成本;(3)经济评价;(4)数据和指标。具体优先事项包括:全面利用对患有限制生命疾病的人及其非正式照护者的姑息治疗的益处;了解不同人群对姑息治疗偏好的多样性;在经济评价中纳入非正式护理成本;将经济评价纳入临床试验和卫生服务研究;量化未满足的姑息治疗需求的程度和位置。结论:本文概述了在姑息治疗中产生适当资金和资源分配所需的经济证据的高优先级研究行动。该研究议程是一种战略工具,可以帮助研究人员在不重复工作的情况下解决差距。通过关注这些优先事项,我们的目标是支持在澳大利亚发展更有效、公平和可持续的姑息治疗服务。
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引用次数: 0
Bereaved informal carers' experience of an interventional clinical research project at the end-of-life: a qualitative interview study. 丧偶的非正式照顾者在临终介入临床研究项目中的经验:一项定性访谈研究。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-10-29 DOI: 10.1186/s12904-025-01872-6
Miriam White, Michael Connolly, Andrew Davies

Background: This qualitative study was undertaken to obtain feedback from informal carers about their experiences of involvement in a cluster randomised trial of clinically-assisted hydration in the last days of life ("CHELsea II trial").

Methods: Informal carers that had taken part in the trial post-bereavement postal survey, and had expressed an interest in taking part in further research, were approached about this post-bereavement qualitative study. Interviews were conducted remotely, using a semi-structured interview schedule that asked about the impact of the research on patient / their end-of-life care, the impact of the research on the informal carer, and the informal carers views on research at the end-of-life. The interview transcripts were thematically analysed.

Results: Fifteen informal carers took part in the study prior to thematic saturation. Invariably informal carers reported that there was no negative impact on the patient or themselves, and were positive about taking part in future end-of-life research (if the situation occurred). The analysis generated three themes: (a) Purpose, helping, and no disruption; (b) Preparing for what was to come; and (c) Timing of research at the end-of-life.

Conclusions: This study confirms that research can be undertaken in patients at the end-of-life without negatively impacting the experience. Moreover, patients and their informal carers want to take part in such research, as it provides them with purpose during this time, and gives them the chance of helping future patients.

Trial registration: ISRCT Registry (registry number - ISRCTN65858561) - registered 14/09/2021.

背景:本定性研究旨在从非正式护理人员那里获得他们在生命最后几天参与临床辅助水合作用的聚类随机试验(“切尔西II试验”)的反馈。方法:对参加过初步的失丧后邮政调查,并表示有兴趣参加进一步研究的非正式照顾者,进行了有关失丧后定性研究的接触。访谈是远程进行的,采用半结构化访谈时间表,询问研究对患者/他们的临终关怀的影响,研究对非正式护理人员的影响,以及非正式护理人员对临终研究的看法。对访谈记录进行了主题分析。结果:15名非正式照顾者在主题饱和之前参加了研究。非正式护理人员无一例外地报告说,这对病人或他们自己没有负面影响,并且对参与未来的临终研究(如果发生这种情况)持积极态度。分析产生了三个主题:(a)目的、帮助和不干扰;(b)为将要发生的事情做准备;(c)生命结束时的研究时间。结论:本研究证实,研究可以在患者临终时进行,而不会对体验产生负面影响。此外,患者和他们的非正式护理人员都希望参与这样的研究,因为这让他们在这段时间里有了目标,并给了他们帮助未来患者的机会。试验注册:ISRCT注册中心(注册编号- ISRCTN65858561) -注册日期:2021年9月14日。
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引用次数: 0
The effect of a Finnish national palliative care specialisation education on nurse's palliative care competence: A pretest-posttest study. 芬兰国家姑息治疗专科教育对护士姑息治疗能力的影响:一项前测后测研究。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-10-28 DOI: 10.1186/s12904-025-01913-0
Maarit Lähteenmäki, Minna Koskimäki, Mervi Roos, Virpi Sulosaari, Minna Hökkä

Background: Nurses play an important role in caring for patients in palliative care and they need sufficient palliative care competence. Additionally, the need for palliative care is increasing. Therefore, palliative care and end-of-life care is one of the fields where nurses' specialisation education is needed the most. The aim of this study was to assess the effect of postgraduate specialist education on nurses' palliative care competence and the association between participants' age or work experiences and changes in their palliative care competencies.

Methods: The data were collected through electronic surveys at the beginning and at the end of specialisation education in 17 universities of applied sciences in Finland. The survey was conducted using the Nurses' Core Competence in Palliative Care (NCPC) instrument. The survey response rate was 89% (pre-training) and 69% (post training). Of 286 nurses, 143 completed both the pre- and post-survey. The data were analysed using nonparametric tests. The level of statistical significance was set at p ≤ 0.05.

Results: After the education participants' self-assessed core competencies in palliative care increased compared to before the education, indicating that their knowledge and skills increased in all five domains. Knowledge in Symptom Management, Systematic Use of the Edmonton Symptom Assessment System (ESAS), Teamwork Skills and Interpersonal Skills increased statistically significantly (P < 0.001). Likewise, Life Closure Skills increased statistically significantly (P = 0.044) after the education. Some associations were found, those who had five years or less of work experience in palliative care or end-of-life care reported a greater increase in Interpersonal Skills compared to those with more than ten years of work experience (P = 0.002). Also, those aged 40 or younger reported a greater increase in Interpersonal Skills than those aged 41-50 (P = 0.017).

Conclusion: This study shows that palliative care specialist education increased nurses' palliative care competence. No statistical association was found between work experience in healthcare and changes in competence; the competence of all participants increased during the education. Palliative care specialist education improves nurses' self-assessed competence in palliative care and may indirectly improve the quality of palliative care.

背景:护士在姑息治疗中扮演着重要的角色,护士需要具备足够的姑息治疗能力。此外,对姑息治疗的需求正在增加。因此,姑息治疗和临终关怀是最需要护士专业教育的领域之一。本研究旨在探讨研究生专科教育对护士缓和疗护能力的影响,以及年龄或工作经验与护士缓和疗护能力变化的关系。方法:对芬兰17所应用科学大学专业教育开始和结束时的学生进行电子问卷调查。采用姑息治疗护士核心能力量表(NCPC)进行调查。调查回复率为89%(培训前)和69%(培训后)。286名护士中,143名完成了前后调查。采用非参数检验对数据进行分析。p≤0.05为差异有统计学意义。结果:与教育前相比,教育后参与者自我评估的姑息治疗核心能力有所提高,表明他们在五个领域的知识和技能都有所提高。症状管理知识、埃德蒙顿症状评估系统(ESAS)的系统使用、团队合作能力和人际交往能力均显著提高(P)。结论:姑息治疗专科教育提高了护士的姑息治疗能力。医疗保健工作经验与能力变化之间无统计学关联;在教育过程中,所有参与者的能力都有所提高。姑息治疗专科教育可提高护士在姑息治疗方面的自我评估能力,并可间接提高姑息治疗的质量。
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BMC Palliative Care
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