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Improving the Detection, Assessment, Management and Prevention of Delirium in Hospices (the DAMPen-D study): Feasibility study of a flexible and scalable implementation strategy to deliver guideline-adherent delirium care 改善临终关怀医院谵妄的检测、评估、管理和预防(DAMPen-D 研究):提供符合指南的谵妄护理的灵活、可扩展实施策略的可行性研究
IF 4.4 2区 医学 Q1 Medicine Pub Date : 2024-04-18 DOI: 10.1177/02692163241236325
Gillian P Jackson, Catriona E Jackson, Jason W Boland, Imogen Featherstone, Chao Huang, Margaret Ogden, Kathryn Sartain, Najma Siddiqi, Maureen Twiddy, Mark Pearson, Miriam J Johnson
Background:Delirium is a complex condition, stressful for all involved. Although highly prevalent in palliative care settings, it remains underdiagnosed and associated with poor outcomes. Guideline-adherent delirium care may improve its detection, assessment and management.Aim:To inform a future definitive study that tests whether an implementation strategy designed to improve guideline-adherent delirium care in palliative care settings improves patient outcomes (reduced proportion of in-patient days with delirium).Design:With Patient Involvement members, we conducted a feasibility study to assess the acceptability of and engagement with the implementation strategy by hospice staff (intervention), and whether clinical record data collection of process (e.g. guideline-adherent delirium care) and clinical outcomes (evidence of delirium using a validated chart-based instrument;) pre- and 12-weeks post-implementation of the intervention would be possible.Setting/participants:In-patient admissions in three English hospices.Results:Between June 2021 and December 2022, clinical record data were extracted from 300 consecutive admissions. Despite data collection during COVID-19, target clinical record data collection ( n = 300) was achieved. Approximately two-thirds of patients had a delirium episode during in-patient stay at both timepoints. A 6% absolute reduction in proportion of delirium days in those with a delirium episode was observed. Post-implementation improvements in guideline-adherent metrics include: clinical delirium diagnosis 15%–28%; delirium risk assessment 0%–16%; screening on admission 7%–35%.Conclusions:Collection of data on delirium outcomes and guideline-adherence from clinical records is feasible. The signal of patient benefit supports formal evaluation in a large-scale study.
背景:谵妄是一种复杂的病症,对所有相关人员都会造成压力。尽管谵妄在姑息关怀环境中非常普遍,但其诊断率仍然偏低,且与不良预后相关。目的:为未来的一项确定性研究提供信息,该研究将检验姑息关怀环境中旨在改善谵妄护理指南的实施策略是否能改善患者预后(减少谵妄住院天数比例)。设计:我们与患者参与成员一起开展了一项可行性研究,以评估安宁疗护人员(干预)对实施策略的接受度和参与度,以及临床记录数据收集过程(如谵妄护理指南)是否能改善患者预后。结果:2021 年 6 月至 2022 年 12 月期间,我们从 300 例连续入院患者中提取了临床记录数据。尽管数据收集工作在 COVID-19 期间进行,但临床记录数据收集目标(n = 300)已经实现。在这两个时间点,约有三分之二的患者在住院期间出现过谵妄。谵妄发作患者的谵妄天数比例绝对值减少了 6%。实施后,指南依从性指标的改善包括:临床谵妄诊断15%-28%;谵妄风险评估0%-16%;入院筛查7%-35%。结论:从临床记录中收集谵妄结果和指南依从性数据是可行的。结论:从临床记录中收集谵妄结果和指南遵循情况的数据是可行的,患者获益的信号支持在大规模研究中进行正式评估。
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引用次数: 0
A palliative care goals model for people with dementia and their family: Consensus achieved in an international Delphi study 痴呆症患者及其家庭的姑息关怀目标模型:国际德尔菲研究达成的共识
IF 4.4 2区 医学 Q1 Medicine Pub Date : 2024-04-18 DOI: 10.1177/02692163241234579
Mayumi Nishimura, Karen Harrison Dening, Elizabeth L Sampson, Edison Iglesias de Oliveira Vidal, Miharu Nakanishi, Nathan Davies, Wilson Abreu, Sharon Kaasalainen, Yvonne Eisenmann, Laura Dempsey, Kirsten J Moore, Sascha R Bolt, Judith MM Meijers, Natashe Lemos Dekker, Mitsunori Miyashita, Takeo Nakayama, Jenny T van der Steen
Background:Advance care planning in dementia includes supporting the person and their family to consider important goals of care. International research reports the importance of psycho-social-spiritual aspects towards end of life.Aim:To develop a multidimensional international palliative care goals model in dementia for use in practice.Design:International Delphi study integrating consensus and evidence from a meta-qualitative study. The Delphi panel rated statements about the model on a 5-point agreement scale. The criteria for consensus were pre-specified.Setting/participants:Seventeen researchers from eight countries developed an initial model, and 169 candidate panellists were invited to the international online Delphi study.Results:Panellists (107; response 63.3%) resided in 33 countries. The model comprised four main care goals: (1) Comfort ensured; (2) Control over function maintained; (3) Identity protected and personhood respected and (4) Coping with grief and loss−person and caregiver supported. The model reflects how needs and care goals change over time with the progression of dementia, concluding with bereavement support. The first version of the model achieved a consensus after which it was slightly refined based on feedback. We did not achieve a consensus on adding a goal of life prolongation, and on use of the model by people with dementia and family themselves.Conclusion:A new palliative care goals model for people with dementia and their families includes relationship aspects for use by professionals and achieved a consensus among a panel with diverse cultural background. The position of life prolongation in relation to palliative care goals needs further research.
背景:痴呆症患者的预先关怀计划包括支持患者及其家人考虑重要的关怀目标。设计:国际德尔菲研究整合了一项元定量研究的共识和证据。德尔菲小组以 5 分同意量表对有关模型的陈述进行评分。设置/参与者:来自 8 个国家的 17 名研究人员制定了初始模型,169 名候选小组成员受邀参加国际在线德尔菲研究。结果:小组成员(107 人;响应率 63.3%)居住在 33 个国家。该模型包括四个主要护理目标:(1) 确保舒适;(2) 保持对功能的控制;(3) 保护身份和尊重人格;(4) 应对悲伤和丧失--个人和护理者得到支持。该模式反映了需求和护理目标如何随着痴呆症的发展而变化,并以丧亲支持作为结束。该模式的第一版已达成共识,之后根据反馈意见对其进行了小幅改进。结论:针对痴呆症患者及其家属的新姑息关怀目标模型包含了供专业人士使用的关系因素,并在具有不同文化背景的专家小组中达成了共识。延长生命与姑息关怀目标之间的关系需要进一步研究。
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引用次数: 0
How do people in prison access palliative care? A scoping review of models of palliative care delivery for people in prison in high-income countries 监狱服刑人员如何获得姑息关怀?高收入国家为监狱服刑人员提供姑息关怀模式的范围界定审查
IF 4.4 2区 医学 Q1 Medicine Pub Date : 2024-04-16 DOI: 10.1177/02692163241242647
Emma Gilbert, Nick De Viggiani, Joana de Sousa Martins, Tanuka Palit, Jessica Sears, Daniel Knights, Audrey Roulston, Mary Turner, Lucy E Selman
Background:An ageing prison population with complex health needs combined with punitive sentencing practices means palliative care for incarcerated individuals is increasingly important. However, there is limited evidence regarding the models of care delivery in high-income countries, and their associated challenges and benefits.Aim:To develop a typology of models of palliative care provision for incarcerated individuals, synthesise evidence of their outcomes and describe facilitators of and challenges in delivering different models of palliative and end-of-life care in prisons.Design:Scoping review following Arksey and O’Malley, with narrative synthesis. The protocol was registered prospectively (reviewregistry1260).Data sources:MEDLINE, EMBASE, CINAHL, PsycINFO, the Social Sciences Citation Index and grey literature were searched on 15th March 2023. The Mixed Methods Appraisal Tool (MMAT) was used for quality appraisal.Results:A total of 16,865 records were screened; 22 peer-reviewed articles and 18 grey literature sources met the inclusion criteria. Three models were identified: Embedded Hospice, Outsourcing Care and Community Collaboration. The Embedded Hospice model shows potential benefits for patients and prisons. Outsourcing Care may miss opportunities for comprehensive care. Collaborative Care relies on proactive prison-community relationships that could be formalised for improvement. Psychosocial and bereavement needs of those dying in prison and their caregivers lack sufficient documentation.Conclusion:Further research is needed to evaluate prison hospice costs and examine how prison hospices impact compassionate release usage. Beyond the USA, policies might formalise care pathways and recognise best practices. Further investigation to address psychosocial needs of people in prison with life-limiting illnesses and post-death bereavement support is required.
背景:监狱人口老龄化,健康需求复杂,再加上惩罚性判刑,这意味着为被监禁者提供姑息关怀日益重要。目的:对为被监禁者提供姑息关怀的模式进行分类,对其结果的证据进行综合,并描述在监狱中提供不同模式的姑息关怀和临终关怀的促进因素和挑战。数据来源:2023 年 3 月 15 日对 MEDLINE、EMBASE、CINAHL、PsycINFO、社会科学引文索引和灰色文献进行了检索。结果:共筛选出 16865 条记录;22 篇同行评审文章和 18 篇灰色文献符合纳入标准。确定了三种模式:嵌入式临终关怀、外包护理和社区合作。嵌入式临终关怀模式显示出对病人和监狱的潜在益处。外包护理可能会错失全面护理的机会。合作护理依赖于积极主动的监狱-社区关系,这种关系可以正式化以得到改善。结论:需要进一步开展研究,评估监狱临终关怀的成本,并研究监狱临终关怀如何影响抚恤性释放的使用。在美国之外,政策可能会正式确定护理路径并认可最佳实践。此外,还需要开展进一步调查,以满足狱中患有局限生命的疾病者的社会心理需求,并为其提供死后丧亲支持。
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引用次数: 0
Experiences with advance care planning in amyotrophic lateral sclerosis: Qualitative longitudinal study with people with amyotrophic lateral sclerosis and their family carers 肌萎缩性脊髓侧索硬化症患者预先护理规划的经验:对肌萎缩性脊髓侧索硬化症患者及其家庭照护者的定性纵向研究
IF 4.4 2区 医学 Q1 Medicine Pub Date : 2024-04-13 DOI: 10.1177/02692163241242320
Isabel Vandenbogaerde, Lieve Van den Block, Luc Deliens, Emma Carduff, Agnes van der Heide, Jan De Bleecker, Aline De Vleminck
Background:It is unclear when people with amyotrophic lateral sclerosis and their family carers think about their future, what they would prefer in terms of care, and how their ideas change over time.Aim:Understanding experiences with advance care planning of persons with amyotrophic lateral sclerosis and their family carers—and if, when, how, and why these experiences change over time.Design:A qualitative longitudinal interview study. Analysis involved content analysis, followed by a two-step timeline method to describe changes in advance care planning experiences within and across participants.Setting/participants:Nine persons with amyotrophic lateral sclerosis and nine family carers who were interviewed three times over a 9-month period.Results:All participants thought about future care, but few talked about it. Over time, advance care planning experiences were influenced by intertwined elements: (1) experienced physical decline and related future care needs; (2) how persons with amyotrophic lateral sclerosis identify themselves as patients; (3) obtaining information about diagnosis and prognosis; (4) professionals initiating conversations about medical aspects of end-of-life decisions; (5) balancing between hope to remain stable and worry about the future; and (6) protecting themselves and each other from worries about the future.Conclusion:This study emphasizes how factors such as coping with the disease and relational dynamics shape individuals’ thoughts about future care over time and how psychological, social, and medical factors are interwoven in advance care planning. The findings advocate for a process-oriented perspective, portraying advance care planning as an ongoing dialog, encompassing the needs, concerns, and emotions of both people with amyotrophic lateral sclerosis and their family carers.
背景:目前尚不清楚肌萎缩侧索硬化症患者及其家庭照护者何时开始考虑自己的未来,他们更希望得到怎样的照护,以及他们的想法会随着时间的推移发生怎样的变化。目的:了解肌萎缩侧索硬化症患者及其家庭照护者在预先照护规划方面的经验,以及这些经验是否、何时、如何以及为何会随着时间的推移而发生变化。分析包括内容分析,然后采用两步时间轴法来描述参与者内部和参与者之间预先护理计划经验的变化。环境/参与者:9 名肌萎缩侧索硬化症患者和 9 名家属照护者,他们在 9 个月内接受了 3 次访谈。随着时间的推移,预先护理计划的经验受到了相互交织的因素的影响:(1)经历的身体衰退和相关的未来护理需求;(2)肌萎缩侧索硬化症患者如何将自己认定为病人;(3)获取有关诊断和预后的信息;(4)专业人士发起有关临终决定的医疗方面的对话;(5)在保持稳定的希望和对未来的担忧之间取得平衡;以及(6)保护自己和对方免于对未来的担忧。结论:本研究强调了应对疾病和关系动态等因素如何随着时间的推移影响个人对未来护理的想法,以及心理、社会和医疗因素如何在预先护理规划中相互交织。研究结果提倡以过程为导向的观点,将预先护理计划描绘成一场持续的对话,其中包含肌萎缩侧索硬化症患者及其家庭照护者的需求、担忧和情感。
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引用次数: 0
A scoping review of guidelines and frameworks for advance care planning for adolescents and young adults with life-limiting or life-threatening conditions 针对患有局限生命或危及生命疾病的青少年的预先护理规划指南和框架的范围界定审查
IF 4.4 2区 医学 Q1 Medicine Pub Date : 2024-04-11 DOI: 10.1177/02692163241242331
Hannah Linane, Bhavana Tanjavur, Lindsay Sullivan
Background:Advance care planning discussions are crucial in the management and support of individuals with life-limiting or life-threatening conditions. Few studies have examined best practices for advance care planning with adolescents and young adults.Aim:To identify core components of current guidelines, frameworks and tools for advance care planning discussions with adolescents and young adults with life-limiting or life-threatening conditions and their families.Design:A scoping review of the literature was conducted followed by a thematic analysis of the included papers. The scoping review was reported according to the Joanna Briggs Institute approach to the conduct of scoping reviews.Data sources:Five databases [Cochrane Central Register of Controlled Trials (CENTRAL), Cochrane Database of Systematic Reviews, PsycInfo, PubMed and Scopus] were searched for English-language papers published between inception until January 2023.Results:The search yielded 2976 papers, of which 9 met the inclusion criteria. Five main themes were identified: (i) utilisation of standardised documents and protocols; (ii) shared decision-making between the adolescents and young adults, their families and the healthcare team; (iii) the importance of open and honest communication with adolescents and young adults during advance care planning discussions; (iv) individualisation and flexibility in the advance care planning process and (v) timing of advance care planning initiation.Conclusions:Results highlight the importance of engaging adolescents and young adults in advance care planning and considering their unique needs when initiating and framing these discussions. Our findings can be used by healthcare professionals to inform advance care planning in this group.
背景:预先医疗计划讨论对于管理和支持患有局限生命或危及生命疾病的患者至关重要。目的:确定与患有局限生命或危及生命疾病的青少年及其家人进行预先护理规划讨论的现行指南、框架和工具的核心内容。设计:对文献进行范围界定,然后对纳入的论文进行专题分析。数据来源:在五个数据库[Cochrane对照试验中央注册中心(CENTRAL)、Cochrane系统性综述数据库、PsycInfo、PubMed和Scopus]中检索了自开始至2023年1月期间发表的英文论文。结果:检索结果显示有2976篇论文,其中9篇符合纳入标准。确定了五大主题:(结论:研究结果强调了让青少年参与预先护理规划的重要性,以及在启动和制定这些讨论时考虑到他们独特需求的重要性。医护人员可以利用我们的研究结果为该群体的预先护理规划提供参考。
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引用次数: 0
Telephone advice lines for adults with advanced illness and their family carers: a qualitative analysis and novel practical framework 针对晚期成人患者及其家庭照顾者的电话咨询热线:定性分析和新颖的实用框架
IF 4.4 2区 医学 Q1 Medicine Pub Date : 2024-04-11 DOI: 10.1177/02692163241242329
Sophie Pask, Allen Omoruyi, Ahmed Mohamed, Rachel L Chambers, Phillippa G McFarlane, Therese Johansson, Rashmi Kumar, Andy Woodhead, Ikumi Okamoto, Stephen Barclay, Irene J Higginson, Katherine E Sleeman, Fliss EM Murtagh
Background:Telephone advice lines have been recommended internationally to support around-the-clock care for people living at home with advanced illness. While they undoubtedly support care, there is little evidence about what elements are needed for success. A national picture is needed to understand, improve and standardise service delivery/care.Aim:To explore telephone advice lines for people living at home with advanced illness across the four UK nations, and to construct a practical framework to improve services.Design:A cross-national evaluation of telephone advice lines using structured qualitative interviews. A patient and public involvement workshop was conducted to refine the framework.Setting/participants:Professionals with responsibilities for how palliative care services are delivered and/or funded at a local or regional level, were purposively sampled.Results:Seventy-one interviews were conducted, covering 60 geographical areas. Five themes were identified. Availability: Ten advice line models were described. Variation led to confusion about who to call and when. Accessibility, awareness and promotion: It was assumed that patients/carers know who to call out-of-hours, but often they did not. Practicalities: Call handlers skills/expertise varied, which influenced how calls were managed. Possible responses ranged from signposting to organising home visits. Integration/continuity of care: Integration between care providers was limited by electronic medical records access/information sharing. Service structure/commissioning: Sustained funding was often an issue for charitably funded organisations.Conclusions:Our novel evidence-based practical framework could be transformative for service design/delivery, as it presents key considerations relating to the various elements of advice lines that may impact on the patient/carer experience.
背景:电话咨询热线在国际上被推荐用于支持对居家晚期病人的全天候护理。电话咨询热线无疑为护理工作提供了支持,但有关成功需要哪些要素的证据却很少。目的:探讨英国四个国家为居家晚期患者提供的电话咨询热线,并构建一个实用框架以改善服务。设计:采用结构化定性访谈对电话咨询热线进行跨国评估。环境/参与者:有目的性地抽取了在地方或区域层面负责姑息关怀服务提供和/或资助的专业人士。结果:共进行了 71 次访谈,覆盖 60 个地理区域。确定了五个主题。可用性:介绍了十种咨询热线模式。这些模式各不相同,导致人们对何时向谁拨打电话感到困惑。可及性、认知度和推广:人们假定病人/护理人员知道在非工作时间该给谁打电话,但他们往往不知道。实用性:呼叫处理人员的技能/专业知识各不相同,这影响了呼叫的处理方式。可能的应对措施包括从指路到组织家访。整合/持续护理:医疗服务提供者之间的整合受到电子病历访问/信息共享的限制。服务结构/委托:结论:我们新颖的循证实用框架可为服务设计/交付带来变革,因为它提出了与咨询热线的各种要素有关的关键考虑因素,这些要素可能会影响患者/护理者的体验。
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引用次数: 0
Shared decision-making in palliative cancer care: A systematic review and metasynthesis. 癌症姑息治疗中的共同决策:系统综述和荟萃。
IF 3.6 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-04-01 Epub Date: 2024-03-13 DOI: 10.1177/02692163241238384
Jannicke Rabben, Bella Vivat, Mariann Fossum, Gudrun Elin Rohde

Background: Shared decision-making is a key element of person-centred care and promoted as the favoured model in preference-sensitive decision-making. Limitations to implementation have been observed, and barriers and limitations, both generally and in the palliative setting, have been highlighted. More knowledge about the process of shared decision-making in palliative cancer care would assist in addressing these limitations.

Aim: To identify and synthesise qualitative data on how people with cancer, informal carers and healthcare professionals experience and perceive shared decision-making in palliative cancer care.

Design: A systematic review and metasynthesis of qualitative studies. We analysed data using inductive thematic analysis.

Data sources: We searched five electronic databases (MEDLINE, EMBASE, PsycINFO, CINAHL and Scopus) from inception until June 2023, supplemented by backward searches.

Results: We identified and included 23 studies, reported in 26 papers. Our analysis produced four analytical themes; (1) Overwhelming situation of 'no choice', (2) Processes vary depending on the timings and nature of the decisions involved, (3) Patient-physician dyad is central to decision-making, with surrounding support and (4) Level of involvement depends on interactions between individuals and systems.

Conclusion: Shared decision-making in palliative cancer care is a complex process of many decisions in a challenging, multifaceted and evolving situation where equipoise and choice are limited. Implications for practice: Implementing shared decision-making in clinical practice requires (1) clarifying conceptual confusion, (2) including members of the interprofessional team in the shared decision-making process and (3) adapting the approach to the ambiguous, existential situations which arise in palliative cancer care.

背景:共同决策是 "以人为本 "护理的一个关键要素,并被推广为偏好敏感决策的首选模式。已观察到实施的局限性,并强调了一般情况下和姑息治疗中的障碍和局限性。对癌症姑息关怀中共同决策过程的更多了解将有助于解决这些局限性。目的:确定并综合有关癌症患者、非正式照护者和医护人员在癌症姑息关怀中如何体验和感知共同决策的定性数据:设计:对定性研究进行系统回顾和荟萃。我们采用归纳式主题分析法对数据进行分析:我们检索了从开始到 2023 年 6 月的五个电子数据库(MEDLINE、EMBASE、PsycINFO、CINAHL 和 Scopus),并辅以反向检索:我们确定并纳入了 26 篇论文中报告的 23 项研究。我们的分析产生了四个分析主题:(1)"别无选择 "的压倒性局面;(2)决策过程因所涉及决策的时间和性质而异;(3)患者与医生之间的关系是决策的核心,并得到周围的支持;(4)参与程度取决于个人与系统之间的互动:癌症姑息治疗中的共同决策是一个复杂的过程,需要在一个具有挑战性、多方面且不断变化的环境中做出许多决定,在这种环境中,等价交换和选择是有限的。对实践的启示:在临床实践中实施共同决策需要:(1)澄清概念上的混淆;(2)将跨专业团队成员纳入共同决策过程;(3)调整该方法以适应癌症姑息治疗中出现的模棱两可的生存状况。
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引用次数: 0
Accelerated transcranial magnetic stimulation for psychological distress in advanced cancer: A phase 2a feasibility and preliminary efficacy clinical trial. 加速经颅磁刺激治疗晚期癌症患者的心理困扰:2a 期可行性和初步疗效临床试验。
IF 4.4 2区 医学 Q1 Medicine Pub Date : 2024-04-01 Epub Date: 2024-03-14 DOI: 10.1177/02692163241234799
James Downar, Julie Lapenskie, Koby Anderson, Jodi Edwards, Christine Watt, Michel Dionne, Jill Rice, Monisha Kabir, Peter Lawlor, Jonathan Downar

Background: Psychological and existential suffering affects many people with advanced illness, and current therapeutic options have limited effectiveness. Repetitive transcranial magnetic stimulation (rTMS) is a safe and effective therapy for refractory depression, but no previous study has used rTMS to treat psychological or existential distress in the palliative setting.

Aim: To determine whether a 5-day course of "accelerated" rTMS is feasible and can improve psychological and/or existential distress in a palliative care setting.

Design: Open-label, single arm, feasibility, and preliminary efficacy study of intermittent theta-burst stimulation to the left dorsolateral prefrontal cortex, 600 pulses/session, 8 sessions/day (once per hour) for 5 days. The outcomes were the rates of recruitment, completion of intervention, and follow-up (Feasibility); and the proportion of participants achieving 50% improvement on the Hamilton Depression Rating Scale (HDRS) or Hospital Anxiety and Depression Scale (HADS) 2 weeks post-treatment (Preliminary Efficacy).

Setting/participants: Adults admitted to our academic Palliative Care Unit with advanced illness, life expectancy >1 month and psychological distress.

Results: Due to COVID-19 pandemic-related interruptions, a total of nine participants were enrolled between August 2021 and April 2023. Two withdrew before starting rTMS, one stopped due to clinical deterioration unrelated to rTMS, and six completed the rTMS treatment. Five of six participants had a >50% improvement in HDRS, HADS-Anxiety, or both between baseline and the 2 week follow up; the sixth died prior to the 2-week follow-up. In this small sample, mean depression scores decreased from baseline to 2 weeks post-treatment (HDRS 18 vs 7, p = 0.03). Side effects of rTMS included transient mild scalp discomfort.

Conclusions: Accelerated rTMS improved symptoms of depression, anxiety, or both in this small feasibility and preliminary efficacy study. A larger, sham-controlled study is warranted to determine whether rTMS could be an effective, acceptable, and scalable treatment in the palliative setting.

Trial registration: NCT04257227.

背景:心理和生存痛苦影响着许多晚期患者,而目前的治疗方案效果有限。重复经颅磁刺激(rTMS)是治疗难治性抑郁症的一种安全有效的疗法,但之前还没有研究在姑息治疗中使用rTMS治疗心理或生存痛苦。目的:确定为期5天的 "加速 "rTMS疗程是否可行,是否能改善姑息治疗中的心理和/或生存痛苦:设计:开放标签、单臂、可行性和初步疗效研究,对左侧背外侧前额叶皮层进行间歇性θ-脉冲刺激,600脉冲/次,8次/天(每小时一次),持续5天。研究结果为招募率、干预完成率和随访率(可行性);治疗后两周汉密尔顿抑郁量表(HDRS)或医院焦虑抑郁量表(HADS)改善率达到50%的参与者比例(初步疗效):环境/参与者:本院姑息治疗病房收治的晚期患者,预期寿命>1个月,有心理困扰:由于 COVID-19 大流行相关的中断,2021 年 8 月至 2023 年 4 月期间共有 9 名参与者入组。其中两人在开始经颅磁刺激治疗前退出,一人因与经颅磁刺激治疗无关的临床恶化而停止治疗,六人完成了经颅磁刺激治疗。从基线到两周随访期间,六名参与者中有五人的 HDRS、HADS-焦虑或两者均有超过 50% 的改善;第六人在两周随访前死亡。在这个小样本中,平均抑郁评分从基线到治疗后两周有所下降(HDRS 18 vs 7,p = 0.03)。经颅磁刺激的副作用包括短暂的头皮轻度不适:结论:在这项小型可行性和初步疗效研究中,加速经颅磁刺激可改善抑郁、焦虑或两者兼有的症状。需要进行更大规模的假对照研究,以确定经颅磁刺激在姑息治疗中是否是一种有效、可接受和可推广的治疗方法:试验注册:NCT04257227。
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引用次数: 0
What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholders. 在对患有局限生命和危及生命疾病的儿童和青少年进行常规护理时,实施以人为本的结果测量的预期益处、风险、障碍和促进因素是什么?对主要利益相关者的定性访谈研究。
IF 4.4 2区 医学 Q1 Medicine Pub Date : 2024-04-01 Epub Date: 2024-03-13 DOI: 10.1177/02692163241234797
Hannah May Scott, Lucy Coombes, Debbie Braybrook, Daney Harðardóttir, Anna Roach, Katherine Bristowe, Myra Bluebond-Langner, Lorna K Fraser, Julia Downing, Bobbie Farsides, Fliss Em Murtagh, Clare Ellis-Smith, Richard Harding

Background: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is limited.

Aim: To identify the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures for children with life-limiting and life-threatening conditions.

Design: Cross-sectional qualitative semi-structured interview study with key stakeholders analysed using Framework analysis informed by the adapted-Consolidated Framework for Implementation Research.

Setting/participants: A total of n = 26 children with life-limiting or life-threatening conditions, n = 40 parents/carers, n = 13 siblings and n = 15 health and social care professionals recruited from six hospitals and three children's hospices and n = 12 Commissioners of health services.

Results: All participants were supportive of future implementation of person-centred outcome measures into care. Anticipated benefits included: better understanding of patient and family priorities, improved communication and collaborative working between professionals and families and standardisation in data collection and reporting. Anticipated risks included increased workload for staff and measures not being used as intended. Implementation barriers included: acceptability and usability of outcome measures by children; burden and capacity of parents/carers regarding completion; privacy concerns; and language barriers. Implementation facilitators included designing measures using language that is meaningful to children and families, ensuring potential benefits of person-centred outcome measures are communicated to encourage 'buy-in' and administering measures with known and trusted professional.

Conclusions: Implementation of person-centred outcome measures offer potential benefits for children with life-limiting and life-threatening conditions. Eight recommendations are made to maximise benefits and minimise risks in implementation.

背景:越来越多的证据表明,在成人姑息关怀中实施以人为本的疗效评估是有依据的。目的:确定对患有危及生命和生命垂危疾病的儿童实施以人为本的结果测量的预期益处、风险、障碍和促进因素:设计:对主要利益相关者进行横断面定性半结构式访谈研究,采用经改编的《实施研究综合框架》中的框架分析法进行分析:从六家医院和三家儿童临终关怀机构以及 12 名医疗服务专员共招募了 n = 26 名患有局限生命或危及生命疾病的儿童、n = 40 名父母/照顾者、n = 13 名兄弟姐妹和 n = 15 名医疗和社会护理专业人员:结果:所有参与者都支持未来在护理中实施以人为本的结果测量。预期的益处包括:更好地了解病人和家庭的优先事项,改善专业人员和家庭之间的沟通与合作,以及数据收集和报告的标准化。预期风险包括:增加工作人员的工作量,以及措施未按预期使用。实施障碍包括:儿童对结果测量的可接受性和可用性;家长/照护者完成测量的负担和能力;隐私问题;以及语言障碍。实施的促进因素包括:使用对儿童和家庭有意义的语言设计测量方法;确保以人为本的结果测量方法的潜在益处得到宣传,以鼓励 "接受";由已知和可信赖的专业人员实施测量方法:结论:实施以人为本的结果测量可为患有局限生命和危及生命疾病的儿童带来潜在益处。本文提出了八项建议,以最大限度地提高实施过程中的益处并降低风险。
{"title":"What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholders.","authors":"Hannah May Scott, Lucy Coombes, Debbie Braybrook, Daney Harðardóttir, Anna Roach, Katherine Bristowe, Myra Bluebond-Langner, Lorna K Fraser, Julia Downing, Bobbie Farsides, Fliss Em Murtagh, Clare Ellis-Smith, Richard Harding","doi":"10.1177/02692163241234797","DOIUrl":"10.1177/02692163241234797","url":null,"abstract":"<p><strong>Background: </strong>There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is limited.</p><p><strong>Aim: </strong>To identify the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures for children with life-limiting and life-threatening conditions.</p><p><strong>Design: </strong>Cross-sectional qualitative semi-structured interview study with key stakeholders analysed using Framework analysis informed by the adapted-Consolidated Framework for Implementation Research.</p><p><strong>Setting/participants: </strong>A total of <i>n</i> = 26 children with life-limiting or life-threatening conditions, <i>n</i> = 40 parents/carers, <i>n</i> = 13 siblings and <i>n</i> = 15 health and social care professionals recruited from six hospitals and three children's hospices and <i>n</i> = 12 Commissioners of health services.</p><p><strong>Results: </strong>All participants were supportive of future implementation of person-centred outcome measures into care. Anticipated benefits included: better understanding of patient and family priorities, improved communication and collaborative working between professionals and families and standardisation in data collection and reporting. Anticipated risks included increased workload for staff and measures not being used as intended. Implementation barriers included: acceptability and usability of outcome measures by children; burden and capacity of parents/carers regarding completion; privacy concerns; and language barriers. Implementation facilitators included designing measures using language that is meaningful to children and families, ensuring potential benefits of person-centred outcome measures are communicated to encourage 'buy-in' and administering measures with known and trusted professional.</p><p><strong>Conclusions: </strong>Implementation of person-centred outcome measures offer potential benefits for children with life-limiting and life-threatening conditions. Eight recommendations are made to maximise benefits and minimise risks in implementation.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":null,"pages":null},"PeriodicalIF":4.4,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11025304/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140120317","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
Subcutaneous sodium valproate in palliative care: A systematic review. 在姑息治疗中皮下注射丙戊酸钠:系统综述。
IF 3.6 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-04-01 Epub Date: 2024-03-05 DOI: 10.1177/02692163241234597
Sheryn Tan, Jeng Swen Ng, Charis Tang, Brandon Stretton, Joshua Kovoor, Aashray Gupta, Thomson Delloso, Tony Zhang, Rudy Goh, Shaddy El-Masri, Michelle Kiley, Ian Maddocks, Adil Harroud, Sybil Stacpoole, Gregory Crawford, Stephen Bacchi

Background: Seizures are an important palliative symptom, the management of which can be complicated by patients' capacity to swallow oral medications. In this setting, and the wish to avoid intravenous access, subcutaneous infusions may be employed. Options for antiseizure medications that can be provided subcutaneously may be limited. Subcutaneous sodium valproate may be an additional management strategy.

Aim: To evaluate the published experience of subcutaneous valproate use in palliative care, namely with respect to effectiveness and tolerability.

Design: A systematic review was registered (PROSPERO CRD42023453427), conducted and reported according to PRISMA reporting guidelines.

Data sources: The databases PubMed, EMBASE and Scopus were searched for publications until August 11, 2023.

Results: The searches returned 429 results, of which six fulfilled inclusion criteria. Case series were the most common study design, and most studies included <10 individuals who received subcutaneous sodium valproate. There were three studies that presented results on the utility of subcutaneous sodium valproate for seizure control, which described it to be an effective strategy. One study also described it as an effective treatment for neuropathic pain. The doses were often based on presumed 1:1 oral to subcutaneous conversion ratios. Only one study described a local site adverse reaction, which resolved with a change of administration site.

Conclusions: There are limited data on the use of subcutaneous sodium valproate in palliative care. However, palliative symptoms for which subcutaneous sodium valproate have been used successfully are seizures and neuropathic pain. The available data have described few adverse effects, supporting its use with an appropriate degree of caution.

背景:癫痫发作是一种重要的姑息性症状,患者吞咽口服药物的能力会使癫痫发作的治疗变得复杂。在这种情况下,为了避免静脉注射,可以采用皮下注射。皮下注射抗癫痫药物的选择可能有限。目的:评估已发表的在姑息治疗中使用丙戊酸钠皮下注射的经验,即有效性和耐受性:设计:根据 PRISMA 报告指南注册了一篇系统性综述(PROSPERO CRD42023453427),并对其进行了研究和报告:在 PubMed、EMBASE 和 Scopus 等数据库中检索了截至 2023 年 8 月 11 日的出版物:检索结果显示,有 429 项结果,其中 6 项符合纳入标准。病例系列是最常见的研究设计,大多数研究都包含结论:在姑息治疗中使用皮下注射丙戊酸钠的数据有限。不过,已成功使用丙戊酸钠皮下注射治疗的姑息症状包括癫痫发作和神经性疼痛。现有数据描述的不良反应很少,支持在适当谨慎的情况下使用。
{"title":"Subcutaneous sodium valproate in palliative care: A systematic review.","authors":"Sheryn Tan, Jeng Swen Ng, Charis Tang, Brandon Stretton, Joshua Kovoor, Aashray Gupta, Thomson Delloso, Tony Zhang, Rudy Goh, Shaddy El-Masri, Michelle Kiley, Ian Maddocks, Adil Harroud, Sybil Stacpoole, Gregory Crawford, Stephen Bacchi","doi":"10.1177/02692163241234597","DOIUrl":"10.1177/02692163241234597","url":null,"abstract":"<p><strong>Background: </strong>Seizures are an important palliative symptom, the management of which can be complicated by patients' capacity to swallow oral medications. In this setting, and the wish to avoid intravenous access, subcutaneous infusions may be employed. Options for antiseizure medications that can be provided subcutaneously may be limited. Subcutaneous sodium valproate may be an additional management strategy.</p><p><strong>Aim: </strong>To evaluate the published experience of subcutaneous valproate use in palliative care, namely with respect to effectiveness and tolerability.</p><p><strong>Design: </strong>A systematic review was registered (PROSPERO CRD42023453427), conducted and reported according to PRISMA reporting guidelines.</p><p><strong>Data sources: </strong>The databases PubMed, EMBASE and Scopus were searched for publications until August 11, 2023.</p><p><strong>Results: </strong>The searches returned 429 results, of which six fulfilled inclusion criteria. Case series were the most common study design, and most studies included <10 individuals who received subcutaneous sodium valproate. There were three studies that presented results on the utility of subcutaneous sodium valproate for seizure control, which described it to be an effective strategy. One study also described it as an effective treatment for neuropathic pain. The doses were often based on presumed 1:1 oral to subcutaneous conversion ratios. Only one study described a local site adverse reaction, which resolved with a change of administration site.</p><p><strong>Conclusions: </strong>There are limited data on the use of subcutaneous sodium valproate in palliative care. However, palliative symptoms for which subcutaneous sodium valproate have been used successfully are seizures and neuropathic pain. The available data have described few adverse effects, supporting its use with an appropriate degree of caution.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11025302/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140040023","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
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Palliative Medicine
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