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Novel Approach to Advance Directive Training : Palliative Fellow Led Workshop Feasible and Effective in Increasing Confidence in End of Life Conversations 预先指导培训的新方法:姑息研究员主持的研讨会在增强生命终结对话的信心方面既可行又有效
Pub Date : 2024-03-07 DOI: 10.1101/2024.03.05.24303812
Chelsea Chang, Jose Rafael Cano Penaloza, Juan Lopez-Alvarenga, Josenny Rodriguez-Paez, Sonya Montes, Meghana Rao
Despite the benefits of Advance directives, approximately only 1 in 3 U.S adults have documented advance directives. In medical school and residency, learners are often not taught or given very brief information on conducting end-of-life planning conversations with patients. Due to this deficiency, some institutions have conducted advance directive workshops but not many have been both palliative fellow and resident led, though some have been led by a geriatric fellow. Therefore, we approached advance directives with a resident and palliative fellow-led workshop. We aimed to develop and conduct a workshop on advance directives to assess feasibility and effectiveness. We sent a survey to 52 residents prior to two one-hour didactic sessions. For the first session, a small group of residents discussed common terminology and the tools available to help patients complete advanced directives in the outpatient setting. A hospice and palliative care fellow led the second session and focused on patient communication and approach. Our results showed that the workshop was well-received and improved resident confidence in discussing advance directives with patients. In conclusion, a resident and palliative fellow-led advance directive workshop for internal medicine residents was feasible and effective in increasing resident confidence.
尽管预先医疗指示好处多多,但大约只有三分之一的美国成年人有预先医疗指示记录。在医学院和住院医师培训中,学习者往往没有接受过关于与患者进行生命末期规划对话的教育,或者只获得了非常简短的信息。由于这一缺陷,一些医疗机构开展了预先医疗指示研讨会,但由姑息研究员和住院医师共同主持的研讨会并不多,尽管有些研讨会是由老年医学研究员主持的。因此,我们举办了一个由住院医师和姑息研究员领导的预嘱研讨会。我们的目标是制定并举办一次有关预先医疗指示的研讨会,以评估其可行性和有效性。我们在两次一小时的授课前向 52 名住院医师发出了调查问卷。在第一节课上,一小组住院医师讨论了常用术语和可用工具,以帮助患者在门诊环境中完成预先医疗指示。安宁疗护和姑息关怀研究员主持了第二节课,重点是患者沟通和方法。我们的研究结果表明,该研讨会广受欢迎,并提高了住院医师与患者讨论预先医疗指示的信心。总之,由住院医师和姑息治疗研究员主导的内科住院医师预先医疗指示研讨会是可行的,并能有效增强住院医师的信心。
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引用次数: 0
Global Assessment of Palliative Care Need: Serious Health-Related Suffering Measurement Methodology 全球姑息关怀需求评估:与健康相关的严重痛苦测量方法
Pub Date : 2024-02-27 DOI: 10.1101/2024.02.26.24303409
Xiaoxiao J Kwete, Afsan Bhadelia, Hector Arreola-Ornelas, Osca Mendez, William E. Rosa E. Rosa, Stephen Connor, Julia Downing, Dean Jamison, David Watkins, Renzo Calderon, Jim Cleary, Joe Friedman, Liliana De Lima, Christian Ntizimira, Tania Pastrana, Pedro E. Perez-Cruz, Dingle Spence, M.R. Rajagopal, Valentina Vargas Enciso, Eric L. Krakauer, Lukas Radbruch, Felicia Marie Knaul
Inequities and gaps in palliative care access are a serious impediment to health systems especially low- and middle-income countries and the accurate measurement of need across health conditions is a critical step to understanding and addressing the issue. Serious Health-related Suffering (SHS) is a novel methodology to measure the palliative care need and was originally developed by The Lancet Commission on Global Access to Palliative Care and Pain Relief. In 2015, the first iteration - SHS 1.0 - was estimated at over 61 million people worldwide experiencing at least 6 billion days of SHS annually as a result of life-limiting and life-threatening conditions. In this paper, we present an updated methodology - SHS2.0 - building on the work of the Lancet Commission and detailing calculations, data requirements, limitations, and assumptions. Our updates to the original methodology focus on measuring the number of people who die with (decedents) or live with (non-decedents) SHS in a given year to assess the number of people in need of palliative care across health conditions and populations. We also share detail on the methodology for measuring the number of days of SHS that was pioneered by the Lancet Commission, as this second measure is essential for determining the health system responses that are necessary to address palliative care need and must be a priority for future methodological work on SHS. We discuss the opportunities for applying SHS to future policy making, assess future research priorities particularly in light of the dearth of data from low- and middle-income countries, and share directions for future work to develop SHS 3.0.
姑息关怀获取方面的不平等和差距严重阻碍了医疗系统的发展,尤其是在中低收入国家,而准确衡量各种健康状况下的需求是了解和解决这一问题的关键一步。严重健康相关痛苦(SHS)是一种衡量姑息关怀需求的新方法,最初由柳叶刀全球姑息关怀和疼痛缓解委员会开发。2015 年,第一次迭代--SHS 1.0--估计全球有超过 6100 万人每年因局限生命和危及生命的病症而经历至少 60 亿天的严重痛苦。在本文中,我们以柳叶刀委员会的工作为基础,详细介绍了计算方法、数据要求、局限性和假设,并提出了更新的方法--SHS2.0。我们对原始方法论的更新侧重于测量特定年份中因(死亡者)SHS 而死亡或因(非死亡者)SHS 而存活的人数,以评估不同健康状况和人群中需要姑息关怀的人数。我们还分享了由柳叶刀委员会首创的SHS天数测量方法的细节,因为这第二种测量方法对于确定满足姑息关怀需求所需的医疗系统应对措施至关重要,必须成为未来SHS方法学工作的优先事项。我们讨论了将社会健康服务应用于未来政策制定的机会,评估了未来的研究重点,特别是考虑到中低收入国家数据的匮乏,并分享了未来开发社会健康服务 3.0 的工作方向。
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引用次数: 0
Prevalence of falls in the last weeks of life and relationship between falls, independence, and quality of dying: A secondary analysis of a large prospective cohort study 生命最后几周跌倒的发生率以及跌倒、独立性和死亡质量之间的关系:一项大型前瞻性队列研究的二次分析
Pub Date : 2024-02-13 DOI: 10.1101/2024.02.12.24302685
Hiroyuki Otani, Shimoinaba Junichi, Kashiwagi Hideyuki, Morita Tatsuya, Maeda Isseki, Yokomichi Naosuke, Hamano Jun, Yamaguchi Takashi, Takashi Yamaguchi, Masanori Mori
Objective:To determine the frequency of falls and their serious complications in palliative care units (PCUs), as well as explore the complex interplay between falls, independence, and quality of dying.Methods: A secondary analysis of a large prospective cohort study of 23 PCUs in Japan was conducted from January 2017 to June 2018. Palliative care specialist physicians recorded whether patients experienced falls, serious complications from falls, activities that led to falls, independence (workability in the last days and use of indwelling urinary catheter), and Good Death Scale.Results: Of the 1,633 patients evaluated, 9.2% (95% Confidence interval [95% CI 7.8 to 11]) experienced falls within 30 days prior to death. The patients who fell were mostly men, had eastern cooperative oncology group performance status 3 on admission, a longer estimated prognosis on admission, and delirium during hospitalization. Serious falls causing fractures or intracranial hemorrhages were rare (0.3% [95% CI 0.038 to 0.57]). The most common reason for falls was the need to use the toilet. The Good Death Scale and indwelling urinary catheter use were not significantly associated with falls. Conclusion: Falls occur in approximately 10% of patients in PCUs, but serious complications are rare. The relationship between falls, independence, and quality of dying is complex; that is, a fall may not be necessarily bad, if it is the result of respect for the patient's independence. Healthcare providers need to consider fall prevention while supporting patients desire to move on their own to maintain independence.
目的:确定姑息治疗病房(PCU)中跌倒的频率及其严重并发症,并探讨跌倒、独立性和死亡质量之间复杂的相互作用:2017年1月至2018年6月,对日本23个PCU的大型前瞻性队列研究进行了二次分析。姑息治疗专科医生记录了患者是否跌倒、跌倒引起的严重并发症、导致跌倒的活动、独立性(最后几天的工作能力和留置导尿管的使用情况)以及良好死亡量表:在接受评估的 1,633 名患者中,9.2%(95% 置信区间 [95% CI 7.8 至 11])的患者在死亡前 30 天内发生过跌倒。跌倒患者多为男性,入院时东部合作肿瘤学组表现为3级,入院时估计预后较长,住院期间出现谵妄。严重跌倒导致骨折或颅内出血的情况很少见(0.3% [95% CI 0.038 to 0.57])。最常见的跌倒原因是需要上厕所。良好死亡量表和留置导尿管的使用与跌倒无明显关系。结论PCU病房中约有10%的患者会发生跌倒,但严重并发症并不多见。跌倒、独立性和死亡质量之间的关系很复杂;也就是说,如果跌倒是尊重病人独立性的结果,那么跌倒并不一定是坏事。医疗服务提供者需要考虑预防跌倒,同时支持患者自行移动以保持独立性的愿望。
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引用次数: 0
Outcomes of prognostication in people living with advanced cancer: a qualitative study to inform a Core Outcome Set 晚期癌症患者的预后结果:一项为核心结果集提供信息的定性研究
Pub Date : 2024-02-12 DOI: 10.1101/2024.02.08.24302518
Caitlin Spooner, Bella Vivat, Nicola White, Patrick Stone
Background: Studies of prognostication in advanced cancer use a wide range of outcomes and outcome measures, making it difficult to compare these studies and their findings. Core Outcome Sets facilitate comparability and standardisation between studies and would benefit future prognostic research. This qualitative study is the second step in developing such a Core Outcome Set, with the aim to explore the perceptions and experiences of patients with advanced cancer, informal caregivers, and clinicians regarding the potential outcomes of prognostication. Methods: We conducted semi-structured interviews with patients living with advanced cancer (n=8), informal caregivers (n=10), and clinicians (n=10) recruited from palliative care services across three sites in London, United Kingdom. Interviews were conducted in-person, via telephone, or video conferencing, and were audio-recorded. Data were analysed using a thematic framework analysis approach. Findings were compared with outcomes derived from a previously published systematic review. Results: We identified 33 outcomes, 16 of which were not previously reported in the literature. We grouped outcomes into 10 domains, using a modified COMET taxonomy: 1) mortality/survival; 2) general physiological/clinical outcomes; 3) psychiatric outcomes; 4) spiritual/religious/existential functioning/wellbeing; 5) emotional functioning/wellbeing; 6) social functioning; 7) delivery of care; 8) perceived health status; 9) personal circumstances; 10) societal/carer burden. These findings highlighted discrepancies between the priorities of existing research and those of stakeholders. Conclusions: This study offers valuable insights into outcomes significant to key stakeholders, underscoring the need for a patient-centred approach in research and clinical practice in prognostication in advanced cancer. These outcomes will play a key role in the development of a Core Outcome Set to assess the impact of prognostication in advanced cancer.
背景:晚期癌症预后研究使用了多种结果和结果测量方法,因此很难对这些研究及其结果进行比较。核心结果集有助于研究之间的可比性和标准化,并有利于未来的预后研究。本定性研究是开发此类核心结果集的第二步,旨在探讨晚期癌症患者、非正式护理人员和临床医生对预后潜在结果的看法和经验。研究方法我们对晚期癌症患者(8 人)、非正式照护者(10 人)和临床医生(10 人)进行了半结构化访谈,访谈对象来自英国伦敦的三个姑息关怀服务机构。访谈以面谈、电话或视频会议的形式进行,并进行了录音。采用主题框架分析法对数据进行分析。研究结果与之前发表的系统综述中得出的结果进行了比较。结果我们确定了 33 项结果,其中 16 项结果以前未在文献中报道过。我们使用修改后的 COMET 分类法将结果分为 10 个领域:1)死亡率/存活率;2)一般生理/临床结果;3)精神病学结果;4)精神/宗教/存在功能/福祉;5)情感功能/福祉;6)社会功能;7)提供护理;8)感知健康状况;9)个人情况;10)社会/护理者负担。这些发现凸显了现有研究重点与利益相关者重点之间的差异。结论:本研究提供了对主要利益相关者具有重要意义的结果的宝贵见解,强调了在晚期癌症预后的研究和临床实践中采用以患者为中心的方法的必要性。这些结果将在开发核心结果集以评估晚期癌症预后影响方面发挥关键作用。
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引用次数: 0
Effectiveness of Psychosocial care interventions in improving the Quality of Life for Adult Patients with Cancer in low-and middle-income countries (LMICs): A Systematic Review and Meta-Analysis Protocol 社会心理护理干预对改善中低收入国家(LMICs)成年癌症患者生活质量的效果:系统回顾与元分析协议
Pub Date : 2024-02-09 DOI: 10.1101/2024.02.08.24302499
David Kavuma, EVe Namisango, Julia Downing, Nixon Nionzima, Alison Annet Kinengyere, Simon Kasasa, Frederick Edward Makumbi, Anthony Ekwaro Obuku, Fred Nuwaha Ntoni
BackgroundPsychosocial care interventions are part and parcel of cancer care and are known for their significant contribution to the improvement of the quality of life (QoL) for cancer patients and their families. Assessment of the QoL of patients with cancer and their families has become critical in cancer care nowadays since it guides health care providers in making informed decisions during the care process. The aim of this meta-analysis is to synthesise the online literature of primary studies from LMICs in order to understand the effectiveness of psychosocial care interventions towards the improvement of the QoL of adult patients with cancer. MethodsThis study will be done in tandem with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) standards. Primary studies that would have investigated the effectiveness of psychosocial care interventions on quality of life of adult cancer patients will be identified through searches in the various electronic databases that are known to produce optimal and efficient searches for systematic reviews and meta-analyses include: Ovid MEDLINE(R), PubMed, EMBASE, APA PsychINFO, Web of Science, PubMed, and Google Scholar. Studies published between 1st January 2002 and 31st December 2023 in any LMIC, will be searched. After developing the meta-analysis question, we have developed a search string from the PICOST (population, intervention, comparison, outcome, study design, setting and Time-frame) model with a limitation on study design. DiscussionThis systematic review and meta-analysis will gather evidence from primary studies on the effectiveness of psychosocial care interventions in improving the QoL for adult patients with cancer in LMICs. Protocol registration: This protocol was registered on 5th June 2023 and its registration number is CRD42023421561.
背景社会心理护理干预是癌症护理的重要组成部分,因其对改善癌症患者及其家属的生活质量(QoL)有重大贡献而闻名。对癌症患者及其家属的生活质量进行评估已成为当今癌症护理的关键,因为它能指导医疗服务提供者在护理过程中做出明智的决定。本荟萃分析旨在综合来自低收入和中等收入国家的主要研究的在线文献,以了解社会心理护理干预对改善成年癌症患者 QoL 的有效性。方法本研究将按照《系统综述和元分析首选报告项目》(PRISMA)标准进行。我们将通过在各种电子数据库中进行检索来确定那些能调查社会心理护理干预对成年癌症患者生活质量的有效性的主要研究,这些数据库已知能为系统综述和荟萃分析提供最佳和高效的检索,其中包括:Ovid MEDLINE()、Ovid MEDLINE()、Ovid MEDLINE()和Ovid MEDLINE():Ovid MEDLINE(R)、PubMed、EMBASE、APA PsychINFO、Web of Science、PubMed 和 Google Scholar。将检索 2002 年 1 月 1 日至 2023 年 12 月 31 日期间在任何低收入国家和地区发表的研究。在提出荟萃分析的问题后,我们根据 PICOST(人群、干预、比较、结果、研究设计、环境和时限)模型制定了搜索字符串,并对研究设计进行了限制。讨论本系统综述和荟萃分析将从初级研究中收集有关社会心理护理干预对改善低收入和中等收入国家成年癌症患者生活质量的有效性的证据。协议注册:本方案于2023年6月5日注册,注册号为CRD42023421561。
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引用次数: 0
An observational study of survival outcomes of people referred for ‘fast-track’ end-of-life care funding in a District General Hospital; too little too late? 一项观察性研究的人转到“快速通道”临终关怀资金在地区综合医院的生存结果;太少太迟了?
Pub Date : 2022-12-26 DOI: 10.1101/2022.12.23.22283895
Jo Morrison, Cherry Chowdhary, Ryan Beazley, James Richards, Charlie Davis
Background End-of-life care frequently requires support for people to die where they feel safe and well-cared for. End-of-life care may require funding to support dying outside of hospital. In England, funding is procured through Continuing Healthcare Fast-Track funding, requiring assessment to determine eligibility. Anecdotal evidence suggested that Fast-Track funding applications were deferred where clinicians thought this inappropriate due to limited life-expectancy.
临终关怀通常需要支持人们在他们感到安全和得到良好照顾的地方死去。临终关怀可能需要资金来支持医院外的死亡。在英格兰,资金是通过持续医疗快速通道资金获得的,需要进行评估以确定资格。轶事证据表明,如果临床医生认为由于预期寿命有限而不合适,则推迟快速通道资金申请。
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引用次数: 0
The Impact on Staff of Providing Non-Invasive Advanced Respiratory Support During the Covid-19 Pandemic– A Qualitative Study in an Acute Hospital Covid-19大流行期间提供无创高级呼吸支持对工作人员的影响——一项急性医院的定性研究
Pub Date : 2022-03-27 DOI: 10.1101/2022.03.21.22272700
David Wenzel, Lucy Bleazard, Eleanor Wilson, Christina Faull
Objectives To explore the experiences of healthcare workers of providing Non-Invasive Advanced Respiratory Support (NARS) to critically unwell patients with covid-19.
目的探讨医护人员对covid-19危重症患者提供无创高级呼吸支持(NARS)的经验。
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引用次数: 0
Existential suffering as a motive for assisted suicide: difficulties, acceptability, management and roles from the perspectives of Swiss professionals 存在的痛苦作为协助自杀的动机:困难,可接受性,管理和角色从瑞士专业人士的角度
Pub Date : 2022-03-23 DOI: 10.1101/2022.03.21.22272665
Marie-Estelle Gaignard, Sophie Pautex, Samia Hurst
Background Existential suffering is often a part of the requests for assisted suicide (AS). Its definitions have gained in clarity recently and refer to a distress arising from an inner realization that life has lost its meaning. There is however a lack of consensus on how to manage existential suffering, especially in a country where AS is legal and little is known about the difficulties faced by professionals confronted with these situations.
存在的痛苦往往是请求协助自杀(AS)的一部分。它的定义最近变得清晰起来,指的是内心意识到生活失去了意义而产生的痛苦。然而,对于如何管理存在的痛苦缺乏共识,特别是在一个AS是合法的国家,对面临这些情况的专业人员所面临的困难知之甚少。
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引用次数: 0
Toward a preventive approach to prolonged grief disorder in palliative care: Insecure attachment moderates the impact of perceived support on the severity of symptoms 对姑息治疗中延长悲伤障碍的预防方法:不安全依恋调节感知支持对症状严重程度的影响
Pub Date : 2022-03-21 DOI: 10.1101/2022.03.18.22272629
Vittorio Lenzo, Alberto Sardella, Cristina Faraone, Maria C. Quattropani
Objective This study aimed to investigate the relationships between the perceived support at the time of assistance, insecure attachment (i.e., avoidance and anxious attachment factors), and the prolonged grief symptoms in family caregivers of palliative care patients deceased for at least one year. We also investigated the moderating role of insecure attachment in the relationship between perceived support and intensity of prolonged grief symptoms.
目的探讨死亡一年以上姑息治疗患者家属照顾者在援助时的支持感知、不安全依恋(即回避和焦虑依恋因素)与延长悲伤症状的关系。我们还调查了不安全依恋在感知支持和长期悲伤症状强度之间的关系中的调节作用。
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引用次数: 0
“I wanna live and not think about the future” What place for advance care planning for people living with severe multiple sclerosis and their families? A qualitative study "我想活下去,不去想未来"重症多发性硬化症患者及其家人的预先护理计划在哪里?定性研究
Pub Date : 2022-03-16 DOI: 10.1101/2022.03.10.22272188
Jonathan Koffman, Clarissa Penfold, Laura Cottrell, Bobbie Farsides, Catherine J Evans, Rachel Burman, Richard Nicholas, Stephen Ashford, Eli Silber
Background Little is known about how people with multiple sclerosis and their families comprehend advance care planning (ACP) and its relevance in their lives.
关于多发性硬化症患者和他们的家庭如何理解提前护理计划(ACP)及其在他们生活中的相关性,我们知之甚少。
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引用次数: 0
期刊
medRxiv - Palliative Medicine
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