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Peer review and Palliative Medicine: Guiding reviewers' contributions to ensuring high quality publications.
IF 3.6 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-02-21 DOI: 10.1177/02692163251321082
Catherine Walshe, Kim Beernaert, Poh Heng Chong, Sonya Lowe, Sandra Martins Pereira, Sarah Yardley
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引用次数: 0
Changes in perception of prognosis in the last year of life of patients with advanced cancer and its associated factors: Longitudinal results of the eQuiPe study. 晚期癌症患者生命最后一年对预后认知的变化及其相关因素:eQuiPe研究的纵向结果
IF 3.6 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-02-01 Epub Date: 2024-12-04 DOI: 10.1177/02692163241301220
M A J Versluis, L V van de Poll-Franse, M Zijlstra, H W M van Laarhoven, G Vreugdenhil, I Henselmans, L Brom, E J M Kuip, Y M van der Linden, N H J Raijmakers

Background: Many patients with advanced cancer are unaware of their limited prognosis, however little is known about the change in awareness during the last year of their lives.

Aim: To investigate changes in the perception of prognosis in the last year of life of patients with advanced cancer and its associated factors.

Design: Prospective, longitudinal, multicentre, observational study in patients with advanced cancer (eQuiPe). Patients completed 3-monthly follow-up questionnaires until death.

Setting/participants: Adult patients diagnosed with advanced cancer were recruited by their treating physician or self-enrolled in one of the forty Dutch hospitals. Only deceased patients with available prognostic data were included for analysis (n = 801).

Results: Perception of prognosis changes in the last year of life with an increase in the percentage of patients who are aware of their limited prognosis (from 15% to 40%). Especially in the last 6 months of life, most of the changes were towards a more realistic perception of prognosis. Patients who did not want to know their prognosis remained relatively stable in their wish not to know (range: 14%-18%). Time to death was associated with having a perception of prognosis of < 1 year, >1 year or not knowing the prognosis, but was not associated with not wanting to know the prognosis.

Conclusion: Becoming aware of their limited prognosis may make patients with advanced cancer more receptive to start end-of-life discussions. Although some patients prefer not to know their prognosis, it remains important to respectfully explore their preferences and wishes for end-of-life care.

背景:许多晚期癌症患者不知道自己的预后有限,然而,在他们生命的最后一年里,人们对这种意识的变化知之甚少。目的:探讨晚期癌症患者生命最后一年对预后认知的变化及其相关因素。设计:对晚期癌症患者进行前瞻性、纵向、多中心观察性研究(eQuiPe)。患者完成3个月随访问卷直至死亡。环境/参与者:诊断为晚期癌症的成年患者由其治疗医生招募,或在荷兰40家医院中的一家自行登记。仅纳入有预后资料的死亡患者进行分析(n = 801)。结果:对预后的感知在生命的最后一年发生变化,意识到自己预后有限的患者比例增加(从15%增加到40%)。特别是在生命的最后6个月,大多数的改变是朝着更现实的预后感知。不希望知道预后的患者在不希望知道预后的情况下保持相对稳定(范围:14%-18%)。死亡时间与对预后有1年的感知或不知道预后相关,但与不想知道预后无关。结论:意识到他们有限的预后可能会使晚期癌症患者更容易接受开始临终讨论。虽然有些病人不愿意知道他们的预后,但尊重地探索他们对临终关怀的偏好和愿望仍然很重要。
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引用次数: 0
Working with people living with motor neurone disease and the impact on professionals' emotional and psychological well-being: A scoping review. 与运动神经元病患者共事及其对专业人员情绪和心理健康的影响:范围综述。
IF 3.6 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-02-01 Epub Date: 2024-11-09 DOI: 10.1177/02692163241291745
Megan Walls, Austin Claffey, David Mockler, Miriam Galvin

Background: Integrated multidisciplinary care is required to manage the progressive and debilitating symptoms associated with motor neurone disease. Professionals can find providing the level of care required by this population clinically and emotionally challenging. To support those working with these patients it is important to understand the experience of the entire multidisciplinary team involved and the impact of working with motor neurone disease on their emotional and psychological well-being.

Aim: To identify what is known about (1) healthcare professionals' experience of working with motor neurone disease and (2) the impact of this work on their emotional and psychological well-being.

Design: Scoping review. Review protocol registered on Open Science Framework.

Sources: Five electronic databases were searched in January 2023 and 2024. Grey literature and hand searches were completed.

Results: Fifty-one sources published between 1990 and 2023 were included. A total of 1692 healthcare professionals are represented. Three main categories were identified: (1) The demands of providing motor neurone disease care. (2) Factors influencing professionals' ability to provide desired levels of care. (3) The emotional impact of working with motor neurone disease. Subcategories are depicted within these.

Conclusion: Positive experiences included job satisfaction, enhanced perspective and receiving gratitude, while negative implications such as stress, emotional exhaustion and burnout also featured. The demands of motor neurone disease patient care, the organisation of services and resources required to meet patient and family needs and the emotional burden for professionals involved, warrant greater recognition in clinical practice, guidelines and future research.

背景:需要多学科综合护理来控制与运动神经元疾病相关的渐进性衰弱症状。专业人员可能会发现,为这类患者提供所需的护理在临床和情感上都具有挑战性。为了支持这些患者,了解整个多学科团队的工作经验以及运动神经元疾病对其情绪和心理健康的影响非常重要。目的:了解(1)医护人员在运动神经元疾病方面的工作经验;(2)这项工作对其情绪和心理健康的影响:设计:范围审查。综述协议已在开放科学框架(Open Science Framework)上注册:在 2023 年 1 月和 2024 年 1 月检索了五个电子数据库。完成了灰色文献和手工检索:结果:纳入了 1990 年至 2023 年间发表的 51 篇文献。共有 1692 名医疗保健专业人员参与其中。确定了三个主要类别:(1) 提供运动神经元疾病护理的需求。(2) 影响专业人员提供理想护理水平的因素。(3) 运动神经元病患者的情绪影响。结论:积极的体验包括工作满意度、视野开阔和心存感激,而消极的影响则包括压力、情感衰竭和职业倦怠。运动神经元病患者护理的要求、为满足患者和家属需求所需的服务组织和资源,以及相关专业人员的情感负担,都值得在临床实践、指导方针和未来研究中得到更多认可。
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引用次数: 0
Challenges of regional hospice and palliative care networks: A group discussion study with coordinators and network experts. 区域安宁疗护与缓和疗护网路的挑战:由协调员与网路专家组成的小组讨论研究。
IF 3.6 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-02-01 Epub Date: 2024-12-11 DOI: 10.1177/02692163241303281
Sven Schwabe, Hanna Aa Röwer, Christoph Buck, Eileen Doctor, Nils Schneider, Franziska A Herbst

Background: Within hospice and palliative care, professionals from various disciplines collaborate to deliver comprehensive care to terminal patients and their relatives. Regional hospice and palliative care networks exist in various countries, aimed at facilitating cooperation among health care providers at a local level. To date, little is known about the challenges faced by these networks.

Aim: This study aimed to explore the challenges faced by regional hospice and palliative care networks in Germany.

Design: A qualitative study with n = 6 group discussions was conducted. Group discussions were recorded, transcribed verbatim and analysed using qualitative content analysis.

Setting/participants: Participants were n = 19 coordinators or leaders of regional hospice and palliative care networks in Germany or persons with theoretical expertise about these structures.

Results: Regional hospice and palliative care networks face numerous challenges relating to: (1) establishment and development, (2) infrastructure, (3) moderation, (4) public relations and information exchange, (5) education and training and (6) the development of regional care services and practices. Network moderation appears crucial for network success and is highly dependent on infrastructural conditions. A key challenge is gaining network acceptance and support from potential network partners. Specifically, this includes securing the commitment of network partners to agree on common goals, develop joint actions and standards and allocate resources effectively.

Conclusions: Sustainable infrastructure, competent network governance and adequate resources for network members are essential for the success of regional hospice and palliative care networks. To improve networking, funding conditions should be simplified, the involvement of network partners should be improved and network coordinators should receive training in network management.

背景:在临终关怀和姑息治疗中,来自不同学科的专业人员合作为临终病人及其亲属提供全面的护理。各国都有区域临终关怀和缓和护理网络,目的是促进地方一级保健提供者之间的合作。迄今为止,人们对这些网络所面临的挑战知之甚少。目的:本研究旨在探讨德国区域安宁疗护与缓和疗护网路所面临的挑战。设计:采用定性研究,共进行n = 6个小组讨论。小组讨论被记录下来,逐字转录,并使用定性内容分析进行分析。环境/参与者:参与者为19名德国区域安宁疗护和缓和疗护网络的协调员或领导者,或对这些结构具有理论专长的人士。结果:区域性安宁疗护与缓和疗护网络面临诸多挑战,包括:(1)建立与发展;(2)基础设施;(3)节制;(4)公共关系与资讯交流;(5)教育与培训;(6)区域疗护服务与实务的发展。网络节制似乎对网络的成功至关重要,并且高度依赖于基础设施条件。一个关键的挑战是获得网络的接受和潜在网络伙伴的支持。具体而言,这包括确保网络合作伙伴承诺就共同目标达成一致,制定联合行动和标准,并有效分配资源。结论:可持续的基础设施、有能力的网络治理和足够的网络成员资源是区域临终关怀和姑息治疗网络成功的关键。为改善联网,应简化供资条件,改善网络伙伴的参与,网络协调员应接受网络管理方面的培训。
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引用次数: 0
Palliative and end-of-life care for patients with pleural mesothelioma: A cohort study. 胸膜间皮瘤患者的姑息和临终关怀:一项队列研究。
IF 3.6 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-02-01 Epub Date: 2024-12-17 DOI: 10.1177/02692163241302454
Donna Wakefield, Tom Ward, Hannah Edge, Catriona R Mayland, Clare Gardiner

Background: Pleural mesothelioma is a rare and incurable cancer, with complex physical and psychological symptoms. Despite recent advances in treatment, prognosis remains poor (average 8-15 months) with a lack of research on palliative and end-of-life care.

Aim: To examine markers suggestive of quality palliative and end-of-life care, including receipt of specialist palliative care, advance care planning, fewer unplanned hospital admissions at end-of-life. To compare variables with socio-economic position to identify if inequalities exist.

Design: A cohort study, retrospectively reviewing the medical notes from diagnosis to death for all patients diagnosed with pleural mesothelioma between 01/01/2016 and 31/12/2021.

Setting/participants: Over 5 years, n = 181 patients were diagnosed with pleural mesothelioma across Teesside (north-east England), n = 30 were alive at study commencement and excluded. For the 151-patient cohort, demographics were as follows: 92% male, 79% aged 70-89 years and 26% in the lowest socio-economic quintile (based on area-level deprivation).

Results: Median survival was 246 days. Within the final 90 days of life, 69% of patients had at least 1 unplanned hospital admission, with 20% having 3+ (range 0-7). Those with the highest socio-economic position had less admissions on average. Specialist palliative care was received by patients, at home 34%, in hospital 26%, in hospice 11%. Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions, were in the final 24 h of life for 18% of patients (median 7 days). Disease specific findings included police attendance for expected deaths and lack of signposting.

Conclusion: Patients with pleural mesothelioma have unplanned admissions to hospital towards the end of life, with possible inequalities; they receive late advance care planning and face challenges unique to their disease. It is important that patients receive high quality palliative end-of-life care through accessing specialist palliative care or have guidance/signposting to other potential sources of support.

背景:胸膜间皮瘤是一种罕见且无法治愈的癌症,具有复杂的生理和心理症状。尽管最近在治疗方面取得了进展,但预后仍然很差(平均为8-15个月),缺乏对姑息治疗和临终关怀的研究。目的:检查暗示质量姑息治疗和临终关怀的标志,包括接受专科姑息治疗、预先护理计划、临终时计划外住院人数减少。将变量与社会经济地位进行比较,以确定是否存在不平等。设计:一项队列研究,回顾性回顾2016年1月1日至2021年12月31日期间诊断为胸膜间皮瘤的所有患者从诊断到死亡的医疗记录。环境/参与者:在5年多的时间里,在Teesside(英格兰东北部),n = 181名被诊断为胸膜间皮瘤的患者,n = 30名在研究开始时还活着,并被排除在外。在151例患者队列中,人口统计数据如下:92%为男性,79%为70-89岁,26%为最低社会经济五分之一(基于地区水平的剥夺)。结果:中位生存期为246天。在生命的最后90天内,69%的患者至少有1次计划外住院,20%有3次以上(范围0-7)。那些社会经济地位最高的学生的平均入学率更低。患者接受专科姑息治疗的比例为:在家34%,在医院26%,在临终关怀医院11%。18%的患者在生命的最后24小时(中位7天)做出了不尝试心肺复苏(dacpr)的决定。针对疾病的具体调查结果包括,警察在预期死亡时出勤,以及缺乏路标。结论:胸膜间皮瘤患者在生命末期有计划外入院,可能存在不平等;他们接受晚期的预先护理计划,并面临疾病特有的挑战。重要的是,患者通过专科姑息治疗获得高质量的临终关怀,或获得其他潜在支持来源的指导/指示。
{"title":"Palliative and end-of-life care for patients with pleural mesothelioma: A cohort study.","authors":"Donna Wakefield, Tom Ward, Hannah Edge, Catriona R Mayland, Clare Gardiner","doi":"10.1177/02692163241302454","DOIUrl":"10.1177/02692163241302454","url":null,"abstract":"<p><strong>Background: </strong>Pleural mesothelioma is a rare and incurable cancer, with complex physical and psychological symptoms. Despite recent advances in treatment, prognosis remains poor (average 8-15 months) with a lack of research on palliative and end-of-life care.</p><p><strong>Aim: </strong>To examine markers suggestive of quality palliative and end-of-life care, including receipt of specialist palliative care, advance care planning, fewer unplanned hospital admissions at end-of-life. To compare variables with socio-economic position to identify if inequalities exist.</p><p><strong>Design: </strong>A cohort study, retrospectively reviewing the medical notes from diagnosis to death for all patients diagnosed with pleural mesothelioma between 01/01/2016 and 31/12/2021.</p><p><strong>Setting/participants: </strong>Over 5 years, <i>n</i> = 181 patients were diagnosed with pleural mesothelioma across Teesside (north-east England), <i>n</i> = 30 were alive at study commencement and excluded. For the 151-patient cohort, demographics were as follows: 92% male, 79% aged 70-89 years and 26% in the lowest socio-economic quintile (based on area-level deprivation).</p><p><strong>Results: </strong>Median survival was 246 days. Within the final 90 days of life, 69% of patients had at least 1 unplanned hospital admission, with 20% having 3+ (range 0-7). Those with the highest socio-economic position had less admissions on average. Specialist palliative care was received by patients, at home 34%, in hospital 26%, in hospice 11%. Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions, were in the final 24 h of life for 18% of patients (median 7 days). Disease specific findings included police attendance for expected deaths and lack of signposting.</p><p><strong>Conclusion: </strong>Patients with pleural mesothelioma have unplanned admissions to hospital towards the end of life, with possible inequalities; they receive late advance care planning and face challenges unique to their disease. It is important that patients receive high quality palliative end-of-life care through accessing specialist palliative care or have guidance/signposting to other potential sources of support.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"286-297"},"PeriodicalIF":3.6,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11776348/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142838690","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
The potential of experience sampling methods in palliative care. 经验抽样方法在姑息治疗中的潜力。
IF 3.6 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-02-01 Epub Date: 2024-12-24 DOI: 10.1177/02692163241306242
Joran Geeraerts, Lara Pivodic, Kim de Nooijer, Lise Rosquin, Eline Naert, Geert Crombez, Mark De Ridder, Lieve Van den Block

Background: Experience sampling methods typically involve multiple self-report assessments per day over consecutive days. Unlike traditional patient-reported outcome measures or interviews, such methods offer the possibility to capture the temporal fluctuations of experiences in daily environments, making them valuable for studying the daily lives of people with advanced illness. Yet, their use in palliative care research is limited.

Aims: To introduce experience sampling methods to the field of palliative care as a valuable tool for studying the everyday experiences of people with advanced illness, and to present the findings of an experience sampling methods pilot study with people with advanced breast or advanced lung cancer.

Evidence used to support the information presented: We draw on published health research using experience sampling methods. We present a newly developed experience sampling methods questionnaire (ESM-AC) and report pilot study findings on the feasibility and acceptability of experience sampling methods among people with advanced breast or lung cancer.

Key learning points: Experience sampling methods hold potential to uncover the dynamics of everyday experiences of people with advanced illness. The methods offer considerable flexibility and options to answer a variety of research questions, but consideration is required regarding sampling protocols and participant burden. We showed appropriate feasibility and acceptable participant burden of the methods among people with advanced breast or advanced lung cancer.

背景:经验抽样方法通常涉及连续几天每天多次自我报告评估。与传统的病人报告的结果测量或访谈不同,这些方法提供了捕捉日常环境中经历的时间波动的可能性,使它们对研究晚期疾病患者的日常生活有价值。然而,它们在姑息治疗研究中的应用是有限的。目的:将经验抽样方法引入姑息治疗领域,作为研究晚期疾病患者日常经验的宝贵工具,并介绍经验抽样方法在晚期乳腺癌或晚期肺癌患者中的初步研究结果。用于支持所提供信息的证据:我们利用经验抽样方法借鉴已发表的卫生研究。我们提出了一种新开发的经验抽样方法问卷(ESM-AC),并报告了经验抽样方法在晚期乳腺癌或肺癌患者中的可行性和可接受性的初步研究结果。关键学习要点:经验抽样方法有可能揭示晚期疾病患者日常经历的动态。这些方法为回答各种研究问题提供了相当大的灵活性和选择,但需要考虑抽样方案和参与者负担。我们在晚期乳腺癌或晚期肺癌患者中显示了适当的可行性和可接受的参与者负担。
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引用次数: 0
Re: Tan et al., Subcutaneous sodium valproate in palliative care: A systematic review. Re: Tan等人,在姑息治疗中皮下丙戊酸钠:一项系统综述。
IF 3.6 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-02-01 Epub Date: 2025-01-05 DOI: 10.1177/02692163241309502
Fiona Hargreaves, Jane Crewe, Sunitha Daniel
{"title":"Re: Tan et al., Subcutaneous sodium valproate in palliative care: A systematic review.","authors":"Fiona Hargreaves, Jane Crewe, Sunitha Daniel","doi":"10.1177/02692163241309502","DOIUrl":"10.1177/02692163241309502","url":null,"abstract":"","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"324"},"PeriodicalIF":3.6,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142932428","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}
引用次数: 0
Community out-of-hours palliative care - 'It's a patchwork of services': A qualitative study exploring care provision. 社区非工作时间的姑息治疗——“这是服务的拼凑”:一项探索护理提供的定性研究。
IF 3.6 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-02-01 Epub Date: 2024-12-11 DOI: 10.1177/02692163241302671
Alice M Firth, Joanna Goodrich, Inez Gaczkowska, Richard Harding, Fliss Em Murtagh, Catherine J Evans

Background: People in receipt of community palliative care usually receive care from a range of services and require access to care 24/7. However, care outside of normal working hours varies, with little understanding of which models of care are optimal.

Aim: To identify and characterise current models of out-of-hours community palliative care in the UK and explore healthcare professionals' views on the barriers and facilitators to providing high quality community out-of-hours care.

Design: Exploratory qualitative study using semi-structured interviews, analysed using reflexive thematic analysis.

Setting and participants: We recruited 39 healthcare professionals from 20 geographic areas. Participants were service leads from community palliative care, district/community nursing and primary care providers.

Results: Four overarching models of out-of-hours palliative care identified, characterised by levels of integration between services, balance between generalist and specialist providers, availability of care and type of care provided (hands-on clinical care/ advisory care). Analysis of barriers and facilitators generated three themes: (1) 'It's never one service': challenges of coordination of care across multiple services, (2) Need for timely skilled management of distressing symptoms, (3) 'We're just plugging gaps': prioritising patient care within limited resources. Patterns within the themes varied across the four models.

Conclusion: This study identifies key characteristics of four common models of out-of-hours palliative care, from the perspectives of professionals. Facilitators of high quality out-of-hours care include: a palliative care specific single point of access for patients; formal structures to integrate generalist/specialist services; and timely/skilled management of symptoms. We provide recommendations for a potential model incorporating these factors.

背景:接受社区姑息治疗的人通常从一系列服务中获得护理,并且需要全天候获得护理。然而,正常工作时间以外的护理各不相同,人们对哪种护理模式是最佳的了解很少。目的:确定和表征当前模式的非工作时间的社区姑息治疗在英国和探索卫生保健专业人员的意见的障碍和促进提供高质量的社区非工作时间的护理。设计:探索性质的研究使用半结构化访谈,分析使用反身性主题分析。环境和参与者:我们从20个地理区域招募了39名医疗保健专业人员。参与者是来自社区姑息治疗、地区/社区护理和初级保健提供者的服务负责人。结果:确定了四种非工作时间姑息治疗的总体模式,其特点是服务之间的整合水平、全科医生和专科医生之间的平衡、护理的可用性和提供的护理类型(动手临床护理/咨询护理)。对障碍和促进因素的分析产生了三个主题:(1)“这绝不是一项服务”:跨多个服务协调护理的挑战,(2)需要及时熟练地管理痛苦症状,(3)“我们只是在填补空白”:在有限的资源内优先照顾病人。主题中的模式在四个模型中各不相同。结论:本研究从专业人员的角度确定了四种常见的非工作时间姑息治疗模式的关键特征。促进高质量非工作时间护理的因素包括:为患者提供特定的姑息治疗单一访问点;整合通才/专家服务的正式结构;及时/熟练地处理症状。我们建议建立一个包含这些因素的潜在模型。
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引用次数: 0
Associations between physicians' personal preferences for end-of-life decisions and their own clinical practice: PROPEL survey study in Europe, North America, and Australia. 医生对临终决定的个人偏好与他们自己的临床实践之间的关系:欧洲、北美和澳大利亚的PROPEL调查研究。
IF 3.6 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-02-01 Epub Date: 2024-12-13 DOI: 10.1177/02692163241300853
Sarah Mroz, Frederick Daenen, Sigrid Dierickx, Freddy Mortier, Ludovica De Panfilis, James Downar, Julie Lapenskie, Koby Anderson, Anna Skold, Courtney Campbell, Toby C Campbell, Rachel Feeney, Lindy Willmott, Ben P White, Kenneth Chambaere, Luc Deliens

Background: Physicians have significant influence on end-of-life decisions. Therefore, it is important to understand the connection between physicians' personal end-of-life care preferences and clinical practice, and whether there is congruence between what they prefer for themselves and for patients.

Aim: Study to what extent physicians believe their personal end-of-life preferences impact their clinical practice and to what extent physicians' personal treatment option preferences differ from what they prefer for their patients.

Design: A cross-sectional survey was conducted from May 2022 to February 2023.

Setting/participants: Eight jurisdictions: Belgium, Italy, Canada, USA (Oregon, Wisconsin, and Georgia), and Australia (Victoria and Queensland). Three physician types were included: general practitioners, palliative care physicians, and other medical specialists.

Results: We analyzed 1157 survey responses. Sixty-two percent of physicians acknowledge considering their own preferences when caring for patients at the end of life and 29.7% believe their personal preferences impact the recommendations they make. Palliative care physicians are less likely to consider their own preferences when caring for and making recommendations to patients. Congruence was found between what physicians prefer for patients and themselves with cardiopulmonary resuscitation considered "not a good option for both" by 99.1% of physicians. Incongruence was found with physicians considering some options "not good for the patient, but good for themselves"-palliative sedation (8.3%), physician-assisted suicide (7.0%), and euthanasia (11.6%).

Conclusion: Physicians consider their own preferences when providing care and their preferences impact the recommendations they make to patients. Incongruence exists between what physicians prefer for themselves and what they prefer for patients.

背景:医生对临终决定有重大影响。因此,了解医生的个人临终关怀偏好与临床实践之间的联系,以及他们为自己和为患者所选择的治疗方案之间是否存在一致性非常重要。目的:研究医生认为他们的个人临终偏好在多大程度上影响了他们的临床实践,以及医生的个人治疗方案偏好与他们为患者所选择的治疗方案之间在多大程度上存在差异:设计:2022 年 5 月至 2023 年 2 月进行了一项横断面调查:八个辖区:比利时、意大利、加拿大、美国(俄勒冈州、威斯康星州和佐治亚州)和澳大利亚(维多利亚州和昆士兰州)。包括三种类型的医生:全科医生、姑息关怀医生和其他医学专家:我们对 1157 份调查回复进行了分析。62%的医生承认在照顾生命末期的病人时会考虑自己的偏好,29.7%的医生认为他们的个人偏好会影响他们提出的建议。姑息治疗医生在护理病人和向病人提出建议时较少考虑自己的偏好。99.1%的医生认为心肺复苏 "对两者都不是好的选择"。医生认为某些选择 "对病人不利,但对自己有利"--姑息镇静(8.3%)、医生协助自杀(7.0%)和安乐死(11.6%)--则存在不一致:结论:医生在提供医疗服务时会考虑自己的偏好,而他们的偏好会影响他们向病人提出的建议。医生对自己的偏好与对病人的偏好之间存在不一致。
{"title":"Associations between physicians' personal preferences for end-of-life decisions and their own clinical practice: PROPEL survey study in Europe, North America, and Australia.","authors":"Sarah Mroz, Frederick Daenen, Sigrid Dierickx, Freddy Mortier, Ludovica De Panfilis, James Downar, Julie Lapenskie, Koby Anderson, Anna Skold, Courtney Campbell, Toby C Campbell, Rachel Feeney, Lindy Willmott, Ben P White, Kenneth Chambaere, Luc Deliens","doi":"10.1177/02692163241300853","DOIUrl":"10.1177/02692163241300853","url":null,"abstract":"<p><strong>Background: </strong>Physicians have significant influence on end-of-life decisions. Therefore, it is important to understand the connection between physicians' personal end-of-life care preferences and clinical practice, and whether there is congruence between what they prefer for themselves and for patients.</p><p><strong>Aim: </strong>Study to what extent physicians believe their personal end-of-life preferences impact their clinical practice and to what extent physicians' personal treatment option preferences differ from what they prefer for their patients.</p><p><strong>Design: </strong>A cross-sectional survey was conducted from May 2022 to February 2023.</p><p><strong>Setting/participants: </strong>Eight jurisdictions: Belgium, Italy, Canada, USA (Oregon, Wisconsin, and Georgia), and Australia (Victoria and Queensland). Three physician types were included: general practitioners, palliative care physicians, and other medical specialists.</p><p><strong>Results: </strong>We analyzed 1157 survey responses. Sixty-two percent of physicians acknowledge considering their own preferences when caring for patients at the end of life and 29.7% believe their personal preferences impact the recommendations they make. Palliative care physicians are less likely to consider their own preferences when caring for and making recommendations to patients. Congruence was found between what physicians prefer for patients and themselves with cardiopulmonary resuscitation considered \"not a good option for both\" by 99.1% of physicians. Incongruence was found with physicians considering some options \"not good for the patient, but good for themselves\"-palliative sedation (8.3%), physician-assisted suicide (7.0%), and euthanasia (11.6%).</p><p><strong>Conclusion: </strong>Physicians consider their own preferences when providing care and their preferences impact the recommendations they make to patients. Incongruence exists between what physicians prefer for themselves and what they prefer for patients.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"266-276"},"PeriodicalIF":3.6,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11789426/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142818850","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
Orally dissolving pilocarpine tablets for xerostomia in advanced cancer: A pilot N-of-1 feasibility study. 口服溶解匹罗卡品片治疗晚期癌症口干:一项N-of-1的可行性研究。
IF 3.6 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-02-01 Epub Date: 2024-12-24 DOI: 10.1177/02692163241306269
Karyn Foster, Geoff Mitchell, Evan Richard, Kathryn J Steadman, Hugh Senior, Rose Estafanos, Janet Hardy

Background: Xerostomia is a common and difficult symptom experienced by patients with cancer. Pilocarpine is a cholinergic agent that stimulates salivation.

Aim: To assess the feasibility of conducting a N-of-1 trial to determine the efficacy of pilocarpine orally dissolving tablets in patients with xerostomia.

Design: Double-blind, crossover, placebo-controlled N-of-1 trials of 5 mg pilocarpine tablets vs placebo. Each trial consisted of three 6-day cycles containing pilocarpine (3 days) and placebo (3 days) in random order.

Setting/participants: Participants with advanced cancer and xerostomia (scoring >3 on an 11-point numerical rating scale) from any cause, were recruited from an inpatient and outpatient palliative care unit in Brisbane, Australia.

Results: Eighteen people were recruited in 17 months. Nine withdrew, seven before or during the first 4 days. Three withdrew due to unacceptable side effects. Two participants met the definition of response (⩾2 point reduction in mean scores active vs placebo cycles). When assessing individual cycles, 15 out of 27 cycles (56%) met the definition of response. More people reported at least one mild episode during pilocarpine than placebo of nausea (6 vs 3), vomiting (3 vs 0) and sweating (3 vs 2). About 48% of adverse event classifications were reported in placebo cycles only.

Conclusion: Recruitment to an N-of-1 trial for xerostomia is feasible but attrition was high (50%). Early dropout may have been due to the trial length, complexity, appropriateness or number of questionnaires. Adverse events were generally mild. Two of 10 participants were considered to have benefited from pilocarpine warranting ongoing treatment.

背景:口干是癌症患者常见且困难的症状。匹罗卡品是一种能刺激唾液分泌的胆碱类药物。目的:评价采用N-of-1试验确定匹罗卡品口腔溶片治疗口干症疗效的可行性。设计:5mg匹罗卡品片与安慰剂的双盲、交叉、安慰剂对照n / 1试验。每个试验包括三个6天的周期,随机顺序包括匹罗卡品(3天)和安慰剂(3天)。环境/参与者:从澳大利亚布里斯班的住院和门诊姑息治疗单位招募了来自任何原因的晚期癌症和口干症(在11分的数值评定量表中得分为bbbb3)的参与者。结果:17个月共招募18人。9人退出,7人在前4天之前或期间退出。其中三人因副作用退出。两名参与者符合反应的定义(与安慰剂周期相比,平均得分减少2分)。在评估单个周期时,27个周期中有15个(56%)符合反应定义。服用匹罗卡品期间至少有一次轻度恶心(6 vs 3)、呕吐(3 vs 0)和出汗(3 vs 2)的患者多于安慰剂组。仅在安慰剂组中报告了约48%的不良事件分类。结论:招募到N-of-1试验治疗口干是可行的,但损失率很高(50%)。早期退出可能是由于试验的长度、复杂性、适当性或问卷的数量。不良事件一般轻微。10名参与者中有2名被认为受益于匹罗卡品,需要持续治疗。
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Palliative Medicine
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