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Music therapy, quality of life and efficacy of immunotherapy for NSCLC. 非小细胞肺癌的音乐治疗、生活质量和免疫治疗效果。
IF 1.8 4区 医学 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-12-23 DOI: 10.1136/spcare-2023-004325
Xu Duan, Yingxue Jia, Jiaying Chai, Wen Li, Lingxue Tang, Anlong Li, Han Ge, Runze Huang, Huaidong Cheng

Objective: Our study examines how non-small cell lung cancer (NSCLC) survivors undergoing immunotherapy can experience reduced anxiety and psychological distress, improved quality of life (QOL) and increased immunotherapy efficacy.

Methods: 133 men and 20 women with NSCLCs were enrolled. In a randomised controlled trial involving a care as usual group (CG) and a music therapy group (MTG), the researchers employed various tools such as the Self-Rating Anxiety Scale, Symptom Distress Thermometer, Functional Assessment of Cancer Therapy-General version 4 and Response Evaluation Criteria in Solid Tumours. These measures were used to evaluate anxiety, psychological distress, QOL and immunotherapy efficacy in patients undergoing immunotherapy before and after patients' completion.

Results: After the intervention, patients in the MTG demonstrated a noteworthy reduction in anxiety (t=6.272, p≤0.001) and distress (t=10.111, p≤0.001), as well as an increase in QOL (t=-7.649, p≤0.001). Moreover, compared with patients in the CG, those in the MTG demonstrated a remarkable drop in anxiety (t=-4.72, p≤0.001) and distress (t=-7.29, p≤0.001), a significant increase in QOL (t=5.363, p≤0.001) and a significant improvement in immunotherapy efficacy (z=-2.18, p≤0.05) after the intervention.

Conclusions: The use of individual music therapy sessions appears to be effective in reducing anxiety and distress, while also increasing QOL and immunotherapy efficacy in patients with NSCLCs undergoing immunotherapy.

目的:本研究探讨非小细胞肺癌(NSCLC)幸存者在接受免疫治疗后如何减少焦虑和心理困扰,改善生活质量(QOL),提高免疫治疗效果。方法:纳入非小细胞肺癌患者133名男性和20名女性。在一项随机对照试验中,研究人员采用了各种工具,如焦虑自评量表、症状困扰温度计、癌症治疗功能评估通用版本4和实体肿瘤反应评估标准,包括照护组(CG)和音乐治疗组(MTG)。采用这些指标评价患者完成免疫治疗前后的焦虑、心理困扰、生活质量和免疫治疗效果。结果:干预后,MTG组患者焦虑(t=6.272, p≤0.001)和痛苦(t=10.111, p≤0.001)显著降低,生活质量(t=-7.649, p≤0.001)显著提高。此外,与CG组相比,MTG组患者干预后焦虑(t=-4.72, p≤0.001)和痛苦(t=-7.29, p≤0.001)显著下降,生活质量显著提高(t=5.363, p≤0.001),免疫治疗疗效显著提高(z=-2.18, p≤0.05)。结论:在接受免疫治疗的非小细胞肺癌患者中,个体化音乐治疗似乎可以有效地减少焦虑和痛苦,同时也可以提高生活质量和免疫治疗效果。
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引用次数: 0
Psychedelic drugs in palliative care: research agenda. 姑息治疗中的致幻剂:研究议程。
IF 1.8 4区 医学 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-12-23 DOI: 10.1136/spcare-2025-005661
Claire Stokes, Aaryan Khagram, Billie Metselaar, Taylan Gurgenci, Phillip Good

Patients with life-limiting illnesses often experience profound emotional and spiritual challenges that conventional palliative care treatments may not fully alleviate. Psychedelics, with their potential to facilitate deep psychological insight, offer a promising approach to enhancing end-of-life care. Despite growing interest and emerging psychiatric applications, their use in palliative settings remains poorly understood, with existing studies limited by small sample sizes and low methodological quality. This article outlines a research agenda that prioritises adequately powered randomised controlled trials with patient-centred outcome measures, with an aim to inform policy and practice change.

患有限制生命的疾病的患者通常会经历深刻的情感和精神挑战,而传统的姑息治疗可能无法完全缓解这些挑战。迷幻药具有促进深入心理洞察的潜力,为加强临终关怀提供了一种很有前途的方法。尽管越来越多的兴趣和新兴的精神病学应用,它们在姑息治疗环境中的应用仍然知之甚少,现有的研究受限于小样本量和低方法学质量。本文概述了一项研究议程,该议程优先考虑具有以患者为中心的结果测量的充分有力的随机对照试验,目的是为政策和实践变化提供信息。
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引用次数: 0
Connect, care, create: practical framework for physical environment design for person-centred palliative care. 连接、关怀、创造:以人为本的姑息关怀物质环境设计实用框架。
IF 1.8 4区 医学 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-12-23 DOI: 10.1136/spcare-2024-004805
Iris Beuls, Ann Petermans, Jan Vanrie

Objective: This article aims to explore architectural-rich insights derived from users' experiences within everyday practice in palliative environments and provides a practical framework for healthcare organisations, architects and researchers involved in (re)designing palliative environments for person-centred care.

Methods: An ethnographic study involving participatory observation was undertaken to gain insight into the influence of palliative environments on the diverse users' subjective experiences. This immersive research took place across multiple palliative environments, encompassing a palliative care unit, a day care centre for palliative care and a hospice located in Belgium. Also, informal conversations and photo-elicitation interviews were conducted with residents, family members, healthcare professionals, volunteers and maintenance staff.

Results: Analysing the subjective experiences yielded a practical framework of four architectural atmospheres (proximity, support, engagement, comfort) intended to serve as guiding principles for designing palliative environments. To shape these atmospheres, this article elaborates on 17 spatial aspects and aligns them with real-life experiences of users within palliative environments, thereby enriching and contextualising these insights.

Conclusions: This study presents a practical framework encompassing atmospheres, spatial aspects and overarching insights. It is augmented by supplemental material featuring real-life user experiences, all directed towards guiding the design of palliative environments in pursuit of person-centred palliative care. This article advocates for a collaborative, interdisciplinary, holistic design approach that acknowledges these considerations' interconnectedness and considers the users' multiple perspectives. Ultimately, this approach serves as a means of bridging design intentions and actual experiences encountered by users in their real-life contexts to assist healthcare organisations and architects in creating environments for person-centred palliative care.

目的:本文旨在探讨从姑息环境中用户的日常实践经验中获得的丰富的建筑学见解,并为医疗机构、建筑师和研究人员提供一个实用的框架,以(重新)设计姑息环境,实现以人为本的关怀:为了深入了解姑息环境对不同用户主观体验的影响,我们开展了一项涉及参与式观察的人种学研究。这项沉浸式研究在多个姑息关怀环境中进行,包括位于比利时的一个姑息关怀病房、一个姑息关怀日间护理中心和一个临终关怀中心。此外,还与住院者、家庭成员、医疗保健专业人员、志愿者和维护人员进行了非正式谈话和照片诱导访谈:结果:通过对主观体验的分析,得出了四种建筑氛围(接近、支持、参与、舒适)的实用框架,作为姑息环境设计的指导原则。为了塑造这些氛围,本文详细阐述了 17 个空间方面,并将其与用户在姑息环境中的真实体验相结合,从而丰富了这些见解,并使其符合实际情况:本研究提出了一个包括氛围、空间方面和总体见解的实用框架。结论:本研究提出了一个实用的框架,包括氛围、空间方面和总体见解,并以用户的真实体验为补充材料,旨在指导姑息环境的设计,以实现以人为本的姑息关怀。这篇文章倡导一种协作、跨学科、整体的设计方法,承认这些考虑因素之间的相互联系,并考虑用户的多角度。最终,这种方法可作为一种手段,将设计意图与用户在现实生活中遇到的实际体验联系起来,帮助医疗机构和建筑师创造以人为本的姑息关怀环境。
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引用次数: 0
Assisted dying: is any healthcare option 100% perfect? 辅助死亡:有100%完美的医疗选择吗?
IF 1.8 4区 医学 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-12-23 DOI: 10.1136/spcare-2025-005686
Claud Regnard, Leonie Herx, Amy Profitt, Matt Dore, Rob George
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引用次数: 0
Interstitial lung disease: multidisciplinary outpatient palliative care service. 间质性肺病:多学科门诊姑息治疗服务。
IF 1.8 4区 医学 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-12-23 DOI: 10.1136/spcare-2025-005745
Mymy Tran, Kah Yee Tham, Susanne Webster, Lauren Troy, Caitlin Fermoyle, Christin Monika Geis, Helen Jo, Alan Teoh, Laura Glenn, Nathan Mortimer, Kelly Mian Chen, Aruvi Thiruvarudchelvan, Tamera J Corte, Anthoulla Mohamudally

Objectives: To facilitate earlier access to palliative care (PC) for interstitial lung disease (ILD) patients, a combined ILD-PC clinic was launched at Royal Prince Alfred Hospital. We describe referral patterns and clinical practice 16 months post-implementation.

Methods: A review of consecutive patients referred to the ILD-PC clinic was performed. Reasons for referral, PC interventions implemented and clinical outcomes were documented.

Results: 36 patients were referred to the ILD-PC clinic (75±8 years; 57% men). Diagnoses included idiopathic pulmonary fibrosis (49%), unclassifiable ILD (14%), chronic hypersensitivity pneumonitis (14%) and connective tissue disease-associated ILD (11%). Reasons for referral included high symptom burden (91%), advanced disease (66%) and disease progression (49%). PC management strategies encompassed symptom management (60%), referral to community PC services (40%), advance care planning (26%) and the prescription of opioids and benzodiazepines (23%). During the follow-up period, 23% of patients self-reported worsening symptoms, 40% demonstrated lung function decline, 11% died and 6% were listed for lung transplantation.

Conclusions: The ILD-PC clinic incorporates a multidisciplinary, patient-centred approach to ILD care by enabling early access to symptom management, community services and advance care planning.

目的:为了促进间质性肺疾病(ILD)患者更早获得姑息治疗(PC),在阿尔弗雷德王子医院启动了一个ILD-PC联合诊所。我们描述转诊模式和临床实践16个月后实施。方法:对连续转介到ILD-PC诊所的患者进行回顾。转诊的原因、PC干预措施的实施和临床结果被记录下来。结果:36例患者转介到ILD-PC诊所(75±8岁,57%为男性)。诊断包括特发性肺纤维化(49%)、无法分类的ILD(14%)、慢性超敏性肺炎(14%)和结缔组织病相关ILD(11%)。转诊的原因包括症状负担高(91%)、疾病晚期(66%)和疾病进展(49%)。PC管理策略包括症状管理(60%)、转介到社区PC服务(40%)、预先护理计划(26%)和阿片类药物和苯二氮卓类药物处方(23%)。在随访期间,23%的患者自我报告症状恶化,40%的患者表现为肺功能下降,11%的患者死亡,6%的患者被列为肺移植。结论:ILD- pc诊所通过早期获得症状管理、社区服务和提前护理计划,采用多学科、以患者为中心的ILD护理方法。
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引用次数: 0
Phenobarbital for palliative sedation therapy: narrative review. 苯巴比妥用于姑息性镇静治疗:叙述性回顾。
IF 1.8 4区 医学 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-12-23 DOI: 10.1136/spcare-2024-005316
Grace Freeman-Spratt, Brendan Tan, Hossein Kasiri

Background: Palliative sedation therapy (PST) is used to treat refractory symptoms at the end of life. Phenobarbital is infrequently used as a third-line agent following unsuccessful symptom control with first-line and second-line agents. However, there is wide clinical and guideline variance in the use of phenobarbital, reflecting a gap in the literature.

Objective: The aim of this study is to summarise the current evidence and guidelines surrounding practices of phenobarbital use in PST and discuss areas for future investigations, specifically regarding route of administration, time to death, dosing and concurrent use of first-line and second-line PST.

Methods: Studies and guidelines on the use of phenobarbital in PST were retrieved from PubMed and Google and the reference list of identified papers through to August 2024.

Key findings: Limited case studies and retrospective audits have been conducted into the use of phenobarbital in PST. These studies and existing guidelines reflect a degree of variance specifically regarding recommendations about route of administration, dosing and use of first-line and second-line PST. Efficacy is not well reported. However, phenobarbital use appears to be safe and does not appear to impact time to survival.

Conclusion: Phenobarbital appears to have a safe and potentially efficacious role as a third-line agent in PST. Great variance exists with regards to optimal dosing and the concurrent use of first- and second-line PST agents. High-quality research and multicentre reviews are required to enhance the understanding of optimal phenobarbital use and encourage evidence-based practice in palliative medicine.

背景:姑息性镇静治疗(PST)用于治疗生命末期的难治性症状。在一线和二线药物控制症状不成功后,苯巴比妥很少用作三线药物。然而,在苯巴比妥的使用方面,临床和指南存在广泛的差异,这反映了文献中的空白。目的:本研究的目的是总结目前关于苯巴比妥在PST中使用的证据和指南,并讨论未来研究的领域,特别是关于一线和二线PST的给药途径、死亡时间、剂量和同时使用。方法:检索截至2024年8月PubMed、谷歌及相关文献参考目录中苯巴比妥在PST中的应用研究及指南。主要发现:对苯巴比妥在PST中的使用进行了有限的案例研究和回顾性审计。这些研究和现有指南反映了一定程度的差异,特别是关于一线和二线PST的给药途径、剂量和使用的建议。疗效没有很好的报道。然而,苯巴比妥的使用似乎是安全的,似乎不影响生存时间。结论:苯巴比妥作为治疗PST的三线药物是安全有效的。在一线和二线PST药物的最佳剂量和同时使用方面存在很大差异。需要进行高质量的研究和多中心综述,以加强对苯巴比妥最佳使用的了解,并鼓励姑息医学中的循证实践。
{"title":"Phenobarbital for palliative sedation therapy: narrative review.","authors":"Grace Freeman-Spratt, Brendan Tan, Hossein Kasiri","doi":"10.1136/spcare-2024-005316","DOIUrl":"10.1136/spcare-2024-005316","url":null,"abstract":"<p><strong>Background: </strong>Palliative sedation therapy (PST) is used to treat refractory symptoms at the end of life. Phenobarbital is infrequently used as a third-line agent following unsuccessful symptom control with first-line and second-line agents. However, there is wide clinical and guideline variance in the use of phenobarbital, reflecting a gap in the literature.</p><p><strong>Objective: </strong>The aim of this study is to summarise the current evidence and guidelines surrounding practices of phenobarbital use in PST and discuss areas for future investigations, specifically regarding route of administration, time to death, dosing and concurrent use of first-line and second-line PST.</p><p><strong>Methods: </strong>Studies and guidelines on the use of phenobarbital in PST were retrieved from PubMed and Google and the reference list of identified papers through to August 2024.</p><p><strong>Key findings: </strong>Limited case studies and retrospective audits have been conducted into the use of phenobarbital in PST. These studies and existing guidelines reflect a degree of variance specifically regarding recommendations about route of administration, dosing and use of first-line and second-line PST. Efficacy is not well reported. However, phenobarbital use appears to be safe and does not appear to impact time to survival.</p><p><strong>Conclusion: </strong>Phenobarbital appears to have a safe and potentially efficacious role as a third-line agent in PST. Great variance exists with regards to optimal dosing and the concurrent use of first- and second-line PST agents. High-quality research and multicentre reviews are required to enhance the understanding of optimal phenobarbital use and encourage evidence-based practice in palliative medicine.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":"47-52"},"PeriodicalIF":1.8,"publicationDate":"2025-12-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145225058","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}
引用次数: 0
Decision-making and physician-assisted suicide: capacity assessment in the Terminally Ill Adults (End of Life) Bill is inadequate. 决策和医生协助自杀:临终成人(生命终结)法案中的能力评估是不充分的。
IF 1.8 4区 医学 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-12-23 DOI: 10.1136/spcare-2025-005878
Ruslan Zinchenko, Allan House, Sheila Hollins
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引用次数: 0
Physical function and rehabilitation in patients with brain tumours: narrative review. 脑肿瘤患者的身体功能和康复:叙述性回顾。
IF 1.8 4区 医学 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-12-23 DOI: 10.1136/spcare-2025-005761
Masahiko Kusaba, Takuro Sakurai, Takuya Fukushima

Patients with brain tumours experience a variety of symptoms and side effects due to treatment, which can seriously affect their physical function and activities of daily living. These patients also face a greater physical burden than that experienced by patients with other cancers, and rehabilitation interventions are important. However, thus far, there have been no sufficient investigations of how rehabilitation interventions contribute to improving patients' physical function, activities of daily living and prognosis. Therefore, a narrative review was conducted to explore physical function and its influence on the prognosis of patients with brain tumours, as well as to investigate the effects of rehabilitation interventions in these patients. Patients with brain tumours experience a decline in physical function and physical activity, which are related to prognosis, over a long period of time. The effects of rehabilitation interventions for patients with brain tumours have been reported in randomised clinical trials and before-and-after studies. Patients with brain tumours experience long-term declines in physical function and activity; therefore, long-term rehabilitation interventions are important for these patients. Furthermore, although the effectiveness of these interventions in randomised clinical trials has been reported, most research is limited to patients with gliomas, and future investigation is required.

脑肿瘤患者在治疗过程中会出现各种症状和副作用,严重影响其身体功能和日常生活活动。这些患者也面临着比其他癌症患者更大的身体负担,康复干预很重要。然而,到目前为止,康复干预对改善患者身体功能、日常生活活动和预后的影响还没有足够的研究。因此,本研究旨在探讨脑肿瘤患者的身体功能及其对预后的影响,并探讨康复干预对这些患者的影响。脑肿瘤患者的身体功能和体力活动在很长一段时间内都会下降,这与预后有关。康复干预对脑肿瘤患者的影响已经在随机临床试验和前后研究中得到了报道。脑肿瘤患者的身体功能和活动长期下降;因此,长期康复干预对这些患者非常重要。此外,尽管这些干预措施在随机临床试验中的有效性已被报道,但大多数研究仅限于胶质瘤患者,需要进一步的研究。
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引用次数: 0
Dignity therapy in cancer palliative care: meaning and resignification of life-a qualitative study. 癌症姑息治疗中的尊严治疗:生命的意义与重命:一项质性研究。
IF 1.8 4区 医学 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-12-23 DOI: 10.1136/spcare-2025-005692
Michelle Uchida Miwa, Carlos Eduardo Paiva, Ana Julia Sucupira Ferreira, Bianca Sakamoto Ribeiro Paiva

Objectives: To understand how dignity therapy (DT) helps patients in the search for meaning and resignification of life.

Methods: Qualitative, exploratory and descriptive study with DT interviews with 30 patients hospitalised in a palliative care unit. Narratives were analysed, categorised through Bardin's content analysis and complete speeches originated into legacy documents.

Results: Categories were adjusted to reflect the essence of each Dignity Therapy Question Protocol question, identifying nine main themes: biography and significant life experiences, moments of vitality and personal fulfilment, personal legacy and meaningful memories, significant roles and personal accomplishments, key achievements and personal pride, important messages and reflections for loved ones, hopes and dreams for loved ones, life lessons and wisdom to share, and advice and guidance for loved ones. Subcategories related mainly to the importance of family and friends, childhood memories, achievements related to graduations, professional career, and material assets, births, parenting, child education and values transmission, gratitude, forgiveness, faith and spirituality, search for meaning in illness, the significance of the present moment, impermanence, social and artistic interactions, farewells, cause-and-effect actions, empathy and character.

Conclusion: This study identified intrinsic topics and unique insights, providing an understanding of how DT helps restore or redefine purpose and meaning amid life-threatening illness.

目的:了解尊严治疗(DT)如何帮助患者寻找生命的意义和重新定义。方法:采用DT访谈法对30例姑息治疗住院患者进行定性、探索性和描述性研究。通过巴尔丁的内容分析对叙事进行分析和分类,完整的演讲源于遗留文献。结果:对类别进行了调整,以反映每个尊严治疗问题协议问题的本质,确定了九个主要主题:传记和重要的人生经历,活力和个人成就的时刻,个人遗产和有意义的回忆,重要的角色和个人成就,主要成就和个人骄傲,对亲人的重要信息和反思,对亲人的希望和梦想,生活教训和智慧分享,以及对亲人的建议和指导。子类别主要与家庭和朋友的重要性、童年记忆、与毕业、职业生涯和物质资产有关的成就、生育、养育子女、儿童教育和价值观传播、感恩、宽恕、信仰和灵性、在疾病中寻找意义、当下的重要性、无常、社会和艺术互动、告别、因果行为、同理心和性格有关。结论:本研究确定了内在的主题和独特的见解,提供了对DT如何帮助在危及生命的疾病中恢复或重新定义目的和意义的理解。
{"title":"Dignity therapy in cancer palliative care: meaning and resignification of life-a qualitative study.","authors":"Michelle Uchida Miwa, Carlos Eduardo Paiva, Ana Julia Sucupira Ferreira, Bianca Sakamoto Ribeiro Paiva","doi":"10.1136/spcare-2025-005692","DOIUrl":"10.1136/spcare-2025-005692","url":null,"abstract":"<p><strong>Objectives: </strong>To understand how dignity therapy (DT) helps patients in the search for meaning and resignification of life.</p><p><strong>Methods: </strong>Qualitative, exploratory and descriptive study with DT interviews with 30 patients hospitalised in a palliative care unit. Narratives were analysed, categorised through Bardin's content analysis and complete speeches originated into legacy documents.</p><p><strong>Results: </strong>Categories were adjusted to reflect the essence of each Dignity Therapy Question Protocol question, identifying nine main themes: biography and significant life experiences, moments of vitality and personal fulfilment, personal legacy and meaningful memories, significant roles and personal accomplishments, key achievements and personal pride, important messages and reflections for loved ones, hopes and dreams for loved ones, life lessons and wisdom to share, and advice and guidance for loved ones. Subcategories related mainly to the importance of family and friends, childhood memories, achievements related to graduations, professional career, and material assets, births, parenting, child education and values transmission, gratitude, forgiveness, faith and spirituality, search for meaning in illness, the significance of the present moment, impermanence, social and artistic interactions, farewells, cause-and-effect actions, empathy and character.</p><p><strong>Conclusion: </strong>This study identified intrinsic topics and unique insights, providing an understanding of how DT helps restore or redefine purpose and meaning amid life-threatening illness.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":"239-242"},"PeriodicalIF":1.8,"publicationDate":"2025-12-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144538732","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}
引用次数: 0
Informal end-of-life care-hidden costs: multi-method analysis. 非正式临终关怀——隐性成本:多方法分析。
IF 1.8 4区 医学 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-12-23 DOI: 10.1136/spcare-2025-005779
Laura Lamfre, María Coller, Clément Meier, Claudia Fischer, Vilma Adriana Tripodoro

Objective: To estimate the economic costs of informal caregiving at the end of life in Argentina, incorporating both direct and indirect costs, and to analyse their distribution through a gender equity lens.

Methods: The study is part of the international iLIVE project and includes data from 153 informal caregivers of patients with life-limiting illnesses in Argentina. Costs were estimated using both the opportunity cost and proxy-good methods. Information was collected at baseline and at the 30-day follow-up using the Caregiver Impact Questionnaire, which measured the time spent on caregiving activities, work productivity losses and compensation. Gender-disaggregated analyses were conducted.

Results: Caregivers provided an average of 57 hours of informal care per week and lost 25 hours of paid work. Emotional support represented the largest share of time (36%), followed by household tasks (25%), practical assistance (22%) and personal care (17%). Using the opportunity cost method, societal costs averaged US$29 293 at baseline and US$18 851 at follow-up. The estimated annual costs using the proxy-good method were US$32 065 at baseline and US$21 595 at follow-up. Women consistently incurred higher costs than men, with a female-to-male cost ratio of 2.0 for unpaid care. Nearly all caregivers (98%) received no financial compensation.

Conclusion: Informal caregiving at the end of life entails a considerable and often overlooked economic burden in Argentina, disproportionately affecting women. Recognising and valuing this work in economic evaluations and public policy is essential to promote gender equity and build more sustainable health systems.

目的:估计阿根廷临终时非正式护理的经济成本,包括直接和间接成本,并通过性别平等的视角分析其分布。方法:该研究是国际iLIVE项目的一部分,包括来自阿根廷153名限制生命疾病患者的非正式护理人员的数据。成本估计使用机会成本和代理良好的方法。在基线和30天的随访中使用护理者影响问卷收集信息,该问卷测量了用于护理活动的时间,工作效率损失和补偿。进行了按性别分类的分析。结果:护理人员每周平均提供57小时的非正式护理,损失25小时的有偿工作。情感支持所占的时间份额最大(36%),其次是家务(25%),实际援助(22%)和个人护理(17%)。使用机会成本法,基线时的社会成本平均为29293美元,随访时为18851美元。使用代理良好方法的估计年费用在基线时为32,065美元,在随访时为21,595美元。女性承担的费用始终高于男性,无偿护理的男女成本比为2.0。几乎所有的护理人员(98%)都没有获得经济补偿。结论:在阿根廷,生命结束时的非正式护理带来了相当大的、往往被忽视的经济负担,对妇女的影响尤为严重。在经济评估和公共政策中承认和评价这项工作对于促进性别平等和建立更可持续的卫生系统至关重要。
{"title":"Informal end-of-life care-hidden costs: multi-method analysis.","authors":"Laura Lamfre, María Coller, Clément Meier, Claudia Fischer, Vilma Adriana Tripodoro","doi":"10.1136/spcare-2025-005779","DOIUrl":"10.1136/spcare-2025-005779","url":null,"abstract":"<p><strong>Objective: </strong>To estimate the economic costs of informal caregiving at the end of life in Argentina, incorporating both direct and indirect costs, and to analyse their distribution through a gender equity lens.</p><p><strong>Methods: </strong>The study is part of the international iLIVE project and includes data from 153 informal caregivers of patients with life-limiting illnesses in Argentina. Costs were estimated using both the opportunity cost and proxy-good methods. Information was collected at baseline and at the 30-day follow-up using the Caregiver Impact Questionnaire, which measured the time spent on caregiving activities, work productivity losses and compensation. Gender-disaggregated analyses were conducted.</p><p><strong>Results: </strong>Caregivers provided an average of 57 hours of informal care per week and lost 25 hours of paid work. Emotional support represented the largest share of time (36%), followed by household tasks (25%), practical assistance (22%) and personal care (17%). Using the opportunity cost method, societal costs averaged US$29 293 at baseline and US$18 851 at follow-up. The estimated annual costs using the proxy-good method were US$32 065 at baseline and US$21 595 at follow-up. Women consistently incurred higher costs than men, with a female-to-male cost ratio of 2.0 for unpaid care. Nearly all caregivers (98%) received no financial compensation.</p><p><strong>Conclusion: </strong>Informal caregiving at the end of life entails a considerable and often overlooked economic burden in Argentina, disproportionately affecting women. Recognising and valuing this work in economic evaluations and public policy is essential to promote gender equity and build more sustainable health systems.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":"122-129"},"PeriodicalIF":1.8,"publicationDate":"2025-12-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145205566","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}
引用次数: 0
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BMJ Supportive & Palliative Care
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