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Collaboration, coordination and communication as facilitators of transitions for patients with advanced cancer: a scoping review linked to the Pal-Cycles project. 协作、协调和沟通是晚期癌症患者过渡的促进因素:与 Pal-Cycles 项目相关的范围界定审查。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-08-07 DOI: 10.1186/s12904-024-01510-7
Rachel Louise Hooley, Sheila Payne, Dunja Begovic, Juan Esteban Correa-Morales, Andrew Harding, Jeroen Hasselaar, Nancy Preston

Background: Person-centred care is becoming increasingly recognised as an important element of palliative care. The current review syntheses evidence in relation to transitions in advanced cancer patients with palliative care needs. The review focuses on specific elements which will inform the Pal-Cycles programme, for patients with advanced cancer transitioning from hospital care to community care. Elements of transitional models for cancer patients may include, identification of palliative care needs, compassionate communication with the patient and family members, collaborative effort to establish a multi-dimensional treatment plan, review and evaluation of the treatment plan and identification of the end of life phase.

Methods: A scoping review of four databases (MEDLINE, EMBASE, CINAHL, PsycINFO) was conducted to identify peer-reviewed studies published from January 2013 to October, 2022. A further hand-search of references to locate additional relevant studies was also undertaken. Inclusion criteria involved cancer patients transitions of care with a minimum of two of components from those listed above. Studies were excluded if they were literature reviews, if transition of care was related to cancer survivors, involved non-cancer patients, had paediatric population, if the transition implied a change of therapy and or a lack of physical transit to a non-hospital place of care. This review was guided by Arksey and O'Malley's framework and narrative synthesis was used.

Results: Out of 5695 records found, 14 records were selected. Transition models identified: increases in palliative care consultations, hospice referrals, reduction in readmission rates and the ability to provide end of life care at home. Transition models highlight emotional and spiritual support for patients and families. No uniform model of transition was apparent, this depends on the healthcare system where it is implemented.

Conclusions: The findings highlight the importance of collaboration, coordination and communication as central mechanisms for transitional model for patients with advanced cancer. This may require careful planning and will need to be tailored to the contexts of each healthcare system.

背景以人为本的关怀越来越被认为是姑息关怀的一个重要因素。本综述综合了与有姑息关怀需求的晚期癌症患者过渡相关的证据。综述的重点是为 "Pal-Cycles "计划提供信息的具体内容,该计划针对从医院护理过渡到社区护理的晚期癌症患者。癌症患者过渡模式的要素可能包括:识别姑息关怀需求、与患者及家属进行富有同情心的沟通、共同努力制定多维治疗计划、审查和评估治疗计划以及识别生命的终结阶段:对四个数据库(MEDLINE、EMBASE、CINAHL、PsycINFO)进行了范围审查,以确定 2013 年 1 月至 2022 年 10 月期间发表的经同行评审的研究。此外,还对参考文献进行了进一步的人工搜索,以查找更多相关研究。纳入标准涉及癌症患者的护理过渡,其中至少包含上述两项内容。如果研究是文献综述,如果护理过渡与癌症幸存者有关,如果涉及非癌症患者,如果有儿科人群,如果过渡意味着改变治疗方法,或者没有实际转到非医院护理场所,则排除在外。本综述以 Arksey 和 O'Malley 的框架为指导,采用叙事综合法:在找到的 5695 份记录中,有 14 份记录被选中。过渡模式确定了:姑息关怀咨询的增加、临终关怀转介、再入院率的降低以及在家中提供生命末期关怀的能力。过渡模式强调为病人和家属提供情感和精神支持。没有明显的统一过渡模式,这取决于实施过渡的医疗保健系统:研究结果强调了合作、协调和沟通作为晚期癌症患者过渡模式核心机制的重要性。这可能需要精心策划,并根据每个医疗系统的具体情况进行调整。
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引用次数: 0
Implementation of a digital distress detection system in palliative care: qualitative data on perspectives of a multiprofessional palliative care team. 在姑息关怀中实施数字危难检测系统:关于一个多专业姑息关怀团队观点的定性数据。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-08-07 DOI: 10.1186/s12904-024-01530-3
Katharina Seibel, Claudia Lorena Orellana Rios, Titus Sparna, Carola Becker, Jan Gaertner, Gerhild Becker, Christopher Boehlke

Background: Digital health technologies such as sensor systems are intended to support healthcare staff in providing adequate patient care. In the Department of Palliative Medicine (University Medical Center Freiburg), we developed and implemented a noninvasive, bed-based sensor system in a pilot study. The aim was to detect distress in patients who were no longer able to express themselves by monitoring heart and respiratory rates, vocalizations, and movement measurements. The sensor system was intended to supplement standard care, which generally cannot guarantee constant monitoring. As there is a lack of data on how healthcare professionals experience such a techno-digital innovation, the aim of this study was to explore how the multiprofessional palliative care team who piloted the sensor system perceived its potential benefits and limitations, and how they experienced the broader context of healthcare technology and research in palliative care.

Methods: We conducted a qualitative interview study with 20 members of the palliative care team and analyzed the recorded, verbatim transcribed interviews using qualitative content analysis.

Results: The sensor system was described as easy to use and as helpful support for patients, care staff, and relatives, especially against the backdrop of demographic change. However, it could not replace human interpretation of stress and subsequent treatment decisions: this remained the expertise of the nursing staff. A potential reduction in personnel was expected to be a risk of a digital monitoring system. The special conditions of research and digital health technologies in an end-of-life context also became clear. Specifically, healthcare staff were open to health technologies if they benefited the patient and were compatible with professional nursing and/or palliative care attitudes. Additionally, a patient-protective attitude and possible interprofessional differences in priorities and the resulting challenges for the team became apparent.

Conclusions: A potential digital solution for distress monitoring was considered useful by palliative care practitioners. However, interprofessional differences and compatibility with existing palliative care practices need to be considered before implementing such a system. To increase user acceptability, the perspectives of healthcare professionals should be included in the implementation of technological innovations in palliative care.

背景:传感器系统等数字健康技术旨在支持医护人员为患者提供充分的护理。我们在弗莱堡大学医学中心姑息医学系的一项试点研究中开发并实施了一种非侵入式床基传感器系统。其目的是通过监测心率、呼吸频率、发声和运动测量来检测已无法表达自己的病人的痛苦。传感器系统旨在补充标准护理,因为标准护理通常无法保证持续监测。由于缺乏有关医护人员如何体验此类数字技术创新的数据,本研究旨在探讨试用该传感器系统的多专业姑息关怀团队如何看待其潜在的益处和局限性,以及他们如何体验姑息关怀中更广泛的医疗技术和研究背景:我们对姑息关怀团队的 20 名成员进行了定性访谈研究,并采用定性内容分析法对逐字记录的访谈内容进行了分析:结果:据描述,传感器系统易于使用,对病人、护理人员和亲属都是有益的支持,尤其是在人口结构发生变化的背景下。然而,该系统并不能取代人类对压力的解读和随后的治疗决定:这仍然是护理人员的专长。数字监测系统可能会面临人员减少的风险。临终研究和数字医疗技术的特殊条件也很明显。具体来说,如果医疗技术对患者有益,并且符合专业护理和/或姑息治疗的态度,那么医护人员对医疗技术持开放态度。此外,保护病人的态度、专业间可能存在的优先事项差异以及由此给团队带来的挑战也变得显而易见:结论:姑息关怀从业人员认为潜在的窘迫监测数字解决方案非常有用。然而,在实施该系统之前,需要考虑专业间的差异以及与现有姑息关怀实践的兼容性。为了提高用户的可接受性,在姑息关怀技术创新的实施过程中应纳入医护人员的观点。
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引用次数: 0
A 15-year experience in pediatric palliative care: a retrospective hospital-based study. 儿科姑息治疗的 15 年经验:一项以医院为基础的回顾性研究。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-08-06 DOI: 10.1186/s12904-024-01532-1
Mirella Schiavon, Pierina Lazzarin, Caterina Agosto, Francesca Rusalen, Antuan Divisic, Anna Zanin, Anna Mercante, Valentina Mirisola, Simonetta Papa, Luca Giacomelli, Franca Benini

Background: The current Italian scenario of pediatric palliative care (PPC) services is characterized by inadequate coverage of the territory. Therefore, it is important to improve the referral of patients to the most appropriate setting (community care, general PPC, or specialized PPC) and to improve the delivery of PPC care.

Methods: Aiming at obtaining information about the referrals to the Padua Pediatric Hospice that could help estimate the investments needed to improve the provision of care, a retrospective analysis has been carried out. The rate of proper referral and discharge, the number of patients followed at the hospice, the mortality rate, and the length of follow-up were analyzed, and, when possible, data were stratified by oncological and non-oncological diseases.

Results: The analysis showed that of the 870 patients referred to the Padua Pediatric Hospice between 2008 and 2022, 76% were affected by non-oncological conditions. 82% of patients referred were taken in charge and most of the remaining patients have been inappropriately referred. The analysis showed a growing number of total referrals, which increased by 195% from 2008 to 2022. An increase in proper referrals and referrals of non-oncological patients was observed alongside a decrease in oncological patient referrals and a trend toward a decrease in discharge rates. A decreased mortality was observed in patients with non-oncological conditions, with only 6% of deceased patients in 2022. Moreover, a longer survival with a median follow-up length of 43 months was observed among patients with non-oncological conditions who were followed up at the Padua Pediatric Hospice for more than 12 months. Conversely, the short survival rate observed for oncological patients suggests that those patients should have been referred to PPC earlier to benefit from palliative care for longer periods.

Conclusions: Considering these data, it is expected that the number of patients needing PPC services will steadily increase in the next years. Hence, there is a need to invest resources to provide the best care delivery model encompassing specific pathways for the transition into adulthood, the establishment of networks within all the Italian regions, and an efficient referral to the more suitable setting of care.

背景:目前,意大利儿科姑息治疗(PPC)服务的特点是覆盖范围不足。因此,改善将病人转诊到最合适的医疗机构(社区医疗机构、普通姑息治疗机构或专业姑息治疗机构)以及改善姑息治疗服务非常重要:为了获取帕多瓦儿科临终关怀中心的转诊信息,帮助估算改善护理服务所需的投资,我们进行了一项回顾性分析。分析了适当转诊和出院率、在临终关怀机构接受随访的患者人数、死亡率和随访时间,并在可能的情况下,按肿瘤和非肿瘤疾病对数据进行了分层:分析结果显示,在2008年至2022年期间转诊到帕多瓦儿科安宁疗护中心的870名患者中,76%患有非肿瘤疾病。82%的转诊患者是由负责人接诊的,其余大部分患者是不适当转诊的。分析表明,转诊总人数不断增加,从 2008 年到 2022 年增加了 195%。在肿瘤患者转诊量减少的同时,适当转诊和非肿瘤患者转诊量也有所增加,出院率呈下降趋势。非肿瘤患者的死亡率有所下降,到 2022 年,死亡患者的比例仅为 6%。此外,在帕多瓦儿科安宁疗护中心接受超过12个月随访的非肿瘤患者的生存期更长,中位随访时间为43个月。相反,肿瘤患者的存活率较低,这表明这些患者本应更早转诊到帕多瓦儿科安宁疗护中心,以便更长时间地从姑息治疗中获益:考虑到这些数据,预计未来几年需要姑息治疗服务的患者人数将稳步上升。因此,有必要投入资源,提供最佳的护理服务模式,包括向成年过渡的特定路径、在意大利所有地区建立网络,以及有效转诊至更合适的护理机构。
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引用次数: 0
Acceptance level of advance care planning and its associated factors among the public: A nationwide survey. 公众对预先医疗规划及其相关因素的接受程度:一项全国性调查。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-08-06 DOI: 10.1186/s12904-024-01533-0
Xue Wang, Yibo Wu, Xinghua Bai, Qiao Qiao, Ling Yu, Lina Ge, Li Qi, Shuang Zang

Background: Advance care planning (ACP) can contribute to individuals making decisions about their healthcare preferences in advance of serious illness. Up to now, the acceptance level and associated factors of ACP among the public in China remain unclear. This study aims to investigate the acceptance level of ACP in China and identify factors associated with it based on the socioecological model.

Methods: A total of 19,738 participants were included in this survey. We employed a random forest regression analysis to select factors derived from the socioecological model. Multivariate generalized linear model analysis was then conducted to explore the factors that were associated with the acceptance level of ACP.

Results: On a scale ranging from 0 to 100, the median score for acceptance level of ACP was 64.00 (IQR: 48.00-83.00) points. The results of the multivariate generalized linear model analysis revealed that participants who scored higher on measures of openness and neuroticism personality traits, as well as those who had greater perceptions of social support, higher levels of health literacy, better neighborly relationships, family health, and family social status, were more likely to accept ACP. Conversely, participants who reported higher levels of subjective well-being and greater family communication levels demonstrated a lower likelihood of accepting ACP.

Conclusions: This study identified multiple factors associated with the acceptance level of ACP. The findings offer valuable insights that can inform the design and implementation of targeted interventions aimed at facilitating a good death and may have significant implications for the formulation of end-of-life care policies and practices in other countries facing similar challenges.

背景:预先护理规划(ACP)有助于个人在罹患重病前对自己的医疗偏好做出决定。迄今为止,中国公众对预先医疗规划的接受程度和相关因素仍不清楚。本研究旨在调查中国公众对 ACP 的接受程度,并基于社会生态模型找出与之相关的因素:方法:本次调查共纳入 19738 名参与者。我们采用随机森林回归分析法,从社会生态模型中筛选出相关因素。然后进行多变量广义线性模型分析,探讨与 ACP 接受程度相关的因素:在 0-100 分的范围内,ACP 接受程度的中位数为 64.00 分(IQR:48.00-83.00)。多变量广义线性模型分析结果显示,在开放性和神经质个性特征测量中得分较高的参与者,以及对社会支持有更多感知、健康知识水平较高、邻里关系较好、家庭健康和家庭社会地位较高的参与者,更有可能接受 ACP。相反,主观幸福感较高和家庭沟通水平较高的参与者接受 ACP 的可能性较低:本研究发现了与 ACP 接受程度相关的多种因素。研究结果提供了宝贵的见解,可为设计和实施旨在促进良好死亡的有针对性的干预措施提供参考,并可能对面临类似挑战的其他国家制定临终关怀政策和实践具有重要意义。
{"title":"Acceptance level of advance care planning and its associated factors among the public: A nationwide survey.","authors":"Xue Wang, Yibo Wu, Xinghua Bai, Qiao Qiao, Ling Yu, Lina Ge, Li Qi, Shuang Zang","doi":"10.1186/s12904-024-01533-0","DOIUrl":"10.1186/s12904-024-01533-0","url":null,"abstract":"<p><strong>Background: </strong>Advance care planning (ACP) can contribute to individuals making decisions about their healthcare preferences in advance of serious illness. Up to now, the acceptance level and associated factors of ACP among the public in China remain unclear. This study aims to investigate the acceptance level of ACP in China and identify factors associated with it based on the socioecological model.</p><p><strong>Methods: </strong>A total of 19,738 participants were included in this survey. We employed a random forest regression analysis to select factors derived from the socioecological model. Multivariate generalized linear model analysis was then conducted to explore the factors that were associated with the acceptance level of ACP.</p><p><strong>Results: </strong>On a scale ranging from 0 to 100, the median score for acceptance level of ACP was 64.00 (IQR: 48.00-83.00) points. The results of the multivariate generalized linear model analysis revealed that participants who scored higher on measures of openness and neuroticism personality traits, as well as those who had greater perceptions of social support, higher levels of health literacy, better neighborly relationships, family health, and family social status, were more likely to accept ACP. Conversely, participants who reported higher levels of subjective well-being and greater family communication levels demonstrated a lower likelihood of accepting ACP.</p><p><strong>Conclusions: </strong>This study identified multiple factors associated with the acceptance level of ACP. The findings offer valuable insights that can inform the design and implementation of targeted interventions aimed at facilitating a good death and may have significant implications for the formulation of end-of-life care policies and practices in other countries facing similar challenges.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"23 1","pages":"201"},"PeriodicalIF":2.5,"publicationDate":"2024-08-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11301855/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141898721","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
A palliative care approach for adult non-cancer patients with life-limiting illnesses is cost-saving or cost-neutral: a systematic review of RCTs. 为患有局限性疾病的非癌症成人患者提供姑息关怀的方法是节约成本还是成本中性:对研究性临床试验的系统回顾。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-08-05 DOI: 10.1186/s12904-024-01516-1
Katharina Janke, Yakubu Salifu, Siva Gavini, Nancy Preston, Amy Gadoud

Background: Patients living with life-limiting illnesses other than cancer constitute the majority of patients in need of palliative care globally, yet most previous systematic reviews of the cost impact of palliative care have not exclusively focused on this population. Reviews that tangentially looked at non-cancer patients found inconclusive evidence. Randomised controlled trials (RCTs) are the gold standard for treatment efficacy, while total health care costs offer a comprehensive measure of resource use. In the sole review of RCTs for non-cancer patients, palliative care reduced hospitalisations and emergency department visits but its effect on total health care costs was not assessed. The aim of this study is to review RCTs to determine the difference in costs between a palliative care approach and usual care in adult non-cancer patients with a life-limiting illness.

Methods: A systematic review using a narrative synthesis approach. The protocol was registered with PROSPERO prospectively (no. CRD42020191082). Eight databases were searched: Medline, CINAHL, EconLit, EMBASE, TRIP database, NHS Evidence, Cochrane Library, and Web of Science from inception to January 2023. Inclusion criteria were: English or German; randomised controlled trials (RCTs); adult non-cancer patients (> 18 years); palliative care provision; a comparator group of standard or usual care. Quality of studies was assessed using Drummond's checklist for assessing economic evaluations.

Results: Seven RCTs were included and examined the following diseases: neurological (3), heart failure (2), AIDS (1) and mixed (1). The majority (6/7) were home-based interventions. All studies were either cost-saving (3/7) or cost-neutral (4/7); and four had improved outcomes for patients or carers and three no change in outcomes.

Conclusions: In a non-cancer population, this is the first systematic review of RCTs that has demonstrated a palliative care approach is cost-saving or at least cost-neutral. Cost savings are achieved without worsening outcomes for patients and carers. These findings lend support to calls to increase palliative care provision globally.

背景:在全球需要姑息关怀的患者中,大多数是患有癌症以外的局限性疾病的患者,但之前大多数关于姑息关怀成本影响的系统性研究都没有专门针对这一人群。对非癌症患者进行切入性研究的综述发现了不确定的证据。随机对照试验(RCT)是衡量治疗效果的黄金标准,而医疗总成本则是衡量资源使用的综合指标。在唯一一项针对非癌症患者的 RCT 研究中,姑息关怀降低了住院率和急诊就诊率,但并未评估其对总医疗成本的影响。本研究的目的是对研究性临床试验进行回顾,以确定姑息关怀方法与常规护理方法对患有生命垂危疾病的成年非癌症患者的成本差异:方法:采用叙事综合法进行系统综述。该方案已在 PROSPERO 进行了前瞻性注册(编号:CRD42020191082)。检索了八个数据库:Medline、CINAHL、EconLit、EMBASE、TRIP 数据库、NHS Evidence、Cochrane Library 和 Web of Science。纳入标准为英语或德语;随机对照试验 (RCT);成年非癌症患者(18 岁以上);提供姑息治疗;标准或常规治疗的比较组。研究质量采用 Drummond 的经济评估核对表进行评估:结果:共纳入了七项 RCT 研究,涉及以下疾病:神经系统疾病(3 项)、心力衰竭(2 项)、艾滋病(1 项)和混合性疾病(1 项)。大多数研究(6/7)都是基于家庭的干预措施。所有研究要么节约了成本(3/7),要么不增加成本(4/7);4 项研究改善了患者或护理人员的治疗效果,3 项研究的治疗效果没有变化:在非癌症人群中,这是首次对研究性临床试验进行系统回顾,证明姑息关怀方法可以节约成本或至少不增加成本。在节约成本的同时,患者和照护者的治疗效果也不会恶化。这些研究结果支持了在全球范围内增加姑息关怀服务的呼吁。
{"title":"A palliative care approach for adult non-cancer patients with life-limiting illnesses is cost-saving or cost-neutral: a systematic review of RCTs.","authors":"Katharina Janke, Yakubu Salifu, Siva Gavini, Nancy Preston, Amy Gadoud","doi":"10.1186/s12904-024-01516-1","DOIUrl":"10.1186/s12904-024-01516-1","url":null,"abstract":"<p><strong>Background: </strong>Patients living with life-limiting illnesses other than cancer constitute the majority of patients in need of palliative care globally, yet most previous systematic reviews of the cost impact of palliative care have not exclusively focused on this population. Reviews that tangentially looked at non-cancer patients found inconclusive evidence. Randomised controlled trials (RCTs) are the gold standard for treatment efficacy, while total health care costs offer a comprehensive measure of resource use. In the sole review of RCTs for non-cancer patients, palliative care reduced hospitalisations and emergency department visits but its effect on total health care costs was not assessed. The aim of this study is to review RCTs to determine the difference in costs between a palliative care approach and usual care in adult non-cancer patients with a life-limiting illness.</p><p><strong>Methods: </strong>A systematic review using a narrative synthesis approach. The protocol was registered with PROSPERO prospectively (no. CRD42020191082). Eight databases were searched: Medline, CINAHL, EconLit, EMBASE, TRIP database, NHS Evidence, Cochrane Library, and Web of Science from inception to January 2023. Inclusion criteria were: English or German; randomised controlled trials (RCTs); adult non-cancer patients (> 18 years); palliative care provision; a comparator group of standard or usual care. Quality of studies was assessed using Drummond's checklist for assessing economic evaluations.</p><p><strong>Results: </strong>Seven RCTs were included and examined the following diseases: neurological (3), heart failure (2), AIDS (1) and mixed (1). The majority (6/7) were home-based interventions. All studies were either cost-saving (3/7) or cost-neutral (4/7); and four had improved outcomes for patients or carers and three no change in outcomes.</p><p><strong>Conclusions: </strong>In a non-cancer population, this is the first systematic review of RCTs that has demonstrated a palliative care approach is cost-saving or at least cost-neutral. Cost savings are achieved without worsening outcomes for patients and carers. These findings lend support to calls to increase palliative care provision globally.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"23 1","pages":"200"},"PeriodicalIF":2.5,"publicationDate":"2024-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11299357/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141890644","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
Psychological stress of general practitioners in the care of patients with palliative care needs: an exploratory study 全科医生在护理有姑息关怀需求的病人时的心理压力:一项探索性研究
IF 3.1 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-08-03 DOI: 10.1186/s12904-024-01529-w
Verena Lopez, Piet van der Keylen, Thomas Kühlein, Maria Sebastião
In Germany, general practitioners play a pivotal role in palliative care provision. Caring for patients with palliative care needs can be a burden for general practitioners, highlighting the importance of self-care and mental health support. This study aimed to explore the role of palliative care in general practitioners’ daily work, the stressors they experience, their coping mechanisms, and the potential benefits of Advance Care Planning in this context. An exploratory approach was employed, combining a short quantitative survey with qualitative interviews. The analysis was based on a structuring qualitative content analysis, following a deductive-inductive procedure and integrating the Stress-Strain Model and Lazarus’ Transactional Model of Stress and Coping. We recruited eleven general practitioners to take part in the study. General practitioners viewed palliative care as integral to their practice but faced challenges such as time constraints and perceived expertise gaps. Societal taboos often hindered conversations on the topic of death. Most general practitioners waited for their patients to initiate the topic. Some general practitioners viewed aspects of palliative care as potentially distressing. They used problem-focused (avoiding negative stressors, structuring their daily schedules) and emotion-focused (discussions with colleagues) coping strategies. Still, general practitioners indicated a desire for specific psychological support options. Advance Care Planning, though relatively unfamiliar, was acknowledged as valuable for end-of-life conversations. Palliative care can be associated with negative psychological stress for general practitioners, often coming from external factors. Despite individual coping strategies in place, it is advisable to explore concepts for professional psychological relief. Not registered.
在德国,全科医生在提供姑息关怀方面发挥着举足轻重的作用。照顾有姑息关怀需求的病人对全科医生来说是一种负担,这凸显了自我保健和心理健康支持的重要性。本研究旨在探讨姑息关怀在全科医生日常工作中所扮演的角色、他们所承受的压力、他们的应对机制以及在这种情况下预先关怀规划的潜在益处。研究采用了一种探索性方法,将简短的定量调查与定性访谈相结合。分析以结构化定性内容分析为基础,遵循演绎-归纳程序,并结合了压力-应变模型和拉扎勒斯的压力与应对事务模型。我们招募了 11 名全科医生参与研究。全科医生认为姑息关怀是他们实践中不可或缺的一部分,但也面临着时间限制和专业知识差距等挑战。社会禁忌往往阻碍了有关死亡话题的对话。大多数全科医生都在等待病人主动提出这个话题。一些全科医生认为姑息关怀的某些方面可能会令人痛苦。他们采用了以问题为中心的应对策略(避免负面压力、安排日常日程)和以情感为中心的应对策略(与同事讨论)。尽管如此,全科医生仍表示希望获得具体的心理支持方案。尽管预先护理计划相对陌生,但它被认为对生命末期谈话很有价值。姑息关怀可能会给全科医生带来负面的心理压力,这些压力往往来自外部因素。尽管已经制定了个人应对策略,但还是应该探索专业心理疏导的概念。未注册。
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引用次数: 0
Palliative care for patients with heart failure and family caregivers in rural Appalachia: a randomized controlled trial 为阿巴拉契亚农村地区的心力衰竭患者和家庭照护者提供姑息关怀:随机对照试验
IF 3.1 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-08-03 DOI: 10.1186/s12904-024-01531-2
Ubolrat Piamjariyakul, Angel Smothers, Kesheng Wang, Saima Shafique, Sijin Wen, Trisha Petitte, Stephanie Young, George Sokos, Carol E. Smith
Heart failure (HF) is a debilitating disease with worsening symptoms and family caregiving burden. HF affects more than 8 million Americans. West Virginia has the highest HF death rate in the U.S. and limited healthcare services. This study tested whether the family HF palliative and end-of-life care intervention (FamPALcare) improved patient and caregiver outcomes at 3- and 6-month study endpoints. This study used a randomized controlled trial design. Patients with HF and their caregivers were randomly assigned together to the intervention (n = 21) or control (n = 18) group. The intervention included five telephone coaching sessions on the HF home, palliative, and end-of-life care. The outcome data collected at baseline and at 3 and 6 months were from the patients’ (a) HF-related health status and depression/anxiety scale scores; and from caregivers’ (b) caregiving burden and depression/anxiety scale scores; and (c) anonymous ratings on the 11-item FamPALcare helpfulness scale, completed by the intervention participants. The mean age of the patients was 65.66 (SD = 13.72) years, and 67% were White males. The mean age of the caregivers was 62.05 (SD = 13.14) years, and 77% were White females. Compared to the controls, patients in the intervention group had significantly greater scores for HF-related health status (p < .05) and lower depression/anxiety scores at 6 months, the study endpoint. The family caregivers in the intervention group had significantly lower scores on caregiving burden (p < .05) and depression/anxiety (p < .01) at 3 months. The mean helpfulness rating was M = 4.46 out of 5 (SD = 0.49). The FamPALcare intervention was found to be effective at improving patient HF-related health status and reducing caregiver burden and improving both patient and caregiver depression and anxiety scores. The FamPALcare HF intervention was found feasible and consistently delivered (fidelity). The FamPALcare intervention’s cost-effectiveness and helpfulness ratings information will be used to plan for subsequent clinical trials. ClinicalTrials.gov NCT04153890, Registered on 4 November 2019, https://clinicaltrials.gov/ct2/show/NCT04153890 .
心力衰竭(HF)是一种使人衰弱的疾病,症状不断恶化,给家庭护理带来沉重负担。心力衰竭影响着 800 多万美国人。西弗吉尼亚州是美国心力衰竭死亡率最高的地区,但医疗保健服务有限。本研究测试了家庭高血压姑息治疗和临终关怀干预(FamPALcare)是否能在 3 个月和 6 个月的研究终点改善患者和护理人员的预后。本研究采用随机对照试验设计。高血压患者及其护理人员被随机分配到干预组(21 人)或对照组(18 人)。干预措施包括五次电话辅导,内容涉及高血压家庭护理、姑息治疗和临终关怀。在基线、3 个月和 6 个月时收集的结果数据来自患者的(a)高血压相关健康状况和抑郁/焦虑量表评分;护理人员的(b)护理负担和抑郁/焦虑量表评分;以及(c)干预参与者完成的 11 项 FamPALcare 帮助量表的匿名评分。患者的平均年龄为 65.66 岁(SD = 13.72),67% 为白人男性。护理人员的平均年龄为 62.05(标准差 = 13.14)岁,77% 为白人女性。与对照组相比,干预组患者的高血压相关健康状况得分明显更高(p < .05),在研究终点 6 个月时的抑郁/焦虑得分更低。干预组的家庭护理人员在 3 个月时的护理负担(p < .05)和抑郁/焦虑(p < .01)得分明显较低。平均帮助评分为 M = 4.46(满分 5 分)(SD = 0.49)。研究发现,FamPALcare 干预疗法能有效改善患者与高血压相关的健康状况,减轻护理人员的负担,改善患者和护理人员的抑郁和焦虑评分。研究发现,FamPALcare 高血压干预措施是可行的,并且能够持续实施(保真度)。FamPALcare 干预的成本效益和有用性评级信息将用于规划后续临床试验。ClinicalTrials.gov NCT04153890,注册日期:2019年11月4日,https://clinicaltrials.gov/ct2/show/NCT04153890 。
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引用次数: 0
Experiences with a national team-based learning program for advance care planning in pediatric palliative care. 儿科姑息关怀中预先护理计划的全国团队学习项目经验。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-08-03 DOI: 10.1186/s12904-024-01515-2
Marijanne Engel, Jurrianne C Fahner, Marije P Hennus, Marijke C Kars

Background: Advance Care Planning (ACP) enables patients and relatives to define and share values, goals and preferences for future medical treatment and care. The IMplementing Pediatric Advance Care Planning Toolkit (IMPACT), developed in the Netherlands, is a method for conducting ACP in pediatric palliative care. Healthcare professionals who were trained to use IMPACT, indicated their need for ongoing support to practice ACP communication skills optimally over time. Therefore, we developed a team-based learning program aimed at teaching participants how to transfer knowledge on ACP, continue practicing ACP communication skills and reflect on ACP conversations within their own team context. The aim of this study was to evaluate the program's transfer of knowledge as well as the professionals' experience and team reflection on ACP.

Methods: A one-day IMPACT train-the-trainer course was developed and a selection of healthcare professionals (facilitators) from pediatric palliative care teams (PPCTs) from all seven Dutch university hospitals and the specialized Center for Pediatric Oncology were invited to participate. Hereafter, facilitators were asked to transfer their course-acquired knowledge to their team members (learners) by organizing two coaching-on-the-job sessions. A mixed-methods design, combining questionnaires and field notes, was used to evaluate the level of knowledge transfer and team reflection achieved.

Results: Eighteen healthcare professionals in the role of facilitator participated in the train-the-trainer course. In seven PPCTs one (n = 3) or two (n = 4) coaching-on-the-job session(s) took place, attended by 29 and 17 learners, respectively. In the questionnaires, 11 facilitators indicated that they had to some extent transferred acquired knowledge to their team members as intended. Sixteen out of 21 learners who participated in at least one coaching-on-the-job session, reported (somewhat) increased self-confidence for conducting ACP conversations. The reported main strength of the program was practicing with/learning from colleagues whereas dealing with workload and variation in existing ACP skills within PPCTs need more attention.

Conclusions: The newly developed team-based learning program resulted in intended transfer of knowledge and methodical reflection on ACP in coaching-on-the-job sessions in most participating PPCTs. Planning coaching-on-the-job sessions regarding ACP in pediatric palliative care with multiple healthcare professionals is challenging and needs more emphasis in the training.

背景:预先护理规划(ACP)使患者和亲属能够确定并分享对未来医疗和护理的价值观、目标和偏好。荷兰开发的 "实施儿科预先护理规划工具包"(IMPACT)是在儿科姑息治疗中实施预先护理规划的一种方法。接受过 IMPACT 使用培训的医护专业人员表示,他们需要持续的支持,以在一段时间内练习 ACP 沟通技能。因此,我们开发了一个以团队为基础的学习项目,旨在教导参与者如何传授 ACP 知识,继续练习 ACP 沟通技巧,并在自己的团队背景下对 ACP 对话进行反思。本研究旨在评估该计划的知识传授以及专业人员的经验和团队对 ACP 的反思:开发了为期一天的 IMPACT 培训师培训课程,并邀请了来自荷兰七所大学医院和儿科肿瘤专科中心的儿科姑息关怀团队(PPCTs)的医护人员(主持人)参加。此后,培训师被要求通过组织两次在职辅导课程,将他们在课程中学到的知识传授给团队成员(学员)。通过问卷调查和现场记录相结合的混合方法,对知识传授和团队反思的水平进行了评估:结果:18 名医疗保健专业人员作为主持人参加了培训师培训课程。在 7 个 PPCT 中,分别有 29 名和 17 名学员参加了一次(3 人)或两次(4 人)在职培训课程。在调查问卷中,有 11 名辅导员表示,他们在一定程度上按照预期将所学知识传授给了团队成员。在至少参加过一次在职培训的 21 名学员中,有 16 人表示(在一定程度上)增强了进行 ACP 对话的自信心。据报告,该计划的主要优势在于与同事一起练习/向同事学习,而处理工作量和PPCT内部现有ACP技能的差异则需要更多关注:结论:新开发的团队学习计划使大多数参与的PPCT在职辅导课程中实现了预期的知识转移和对ACP的有条不紊的思考。在儿科姑息关怀中与多名医护人员一起规划有关ACP的在职辅导课程具有挑战性,需要在培训中予以更多重视。
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引用次数: 0
Advancing the integration of biosignal-based automated pain assessment methods into a comprehensive model for addressing cancer pain 推动将基于生物信号的自动疼痛评估方法整合到解决癌症疼痛的综合模型中
IF 3.1 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-08-03 DOI: 10.1186/s12904-024-01526-z
Marco Cascella, Piergiacomo Di Gennaro, Anna Crispo, Alessandro Vittori, Emiliano Petrucci, Francesco Sciorio, Franco Marinangeli, Alfonso Maria Ponsiglione, Maria Romano, Concetta Ovetta, Alessandro Ottaiano, Francesco Sabbatino, Francesco Perri, Ornella Piazza, Sergio Coluccia
Tailoring effective strategies for cancer pain management requires a careful analysis of multiple factors that influence pain phenomena and, ultimately, guide the therapy. While there is a wealth of research on automatic pain assessment (APA), its integration with clinical data remains inadequately explored. This study aimed to address the potential correlations between subjective and APA-derived objectives variables in a cohort of cancer patients. A multidimensional statistical approach was employed. Demographic, clinical, and pain-related variables were examined. Objective measures included electrodermal activity (EDA) and electrocardiogram (ECG) signals. Sensitivity analysis, multiple factorial analysis (MFA), hierarchical clustering on principal components (HCPC), and multivariable regression were used for data analysis. The study analyzed data from 64 cancer patients. MFA revealed correlations between pain intensity, type, Eastern Cooperative Oncology Group Performance status (ECOG), opioids, and metastases. Clustering identified three distinct patient groups based on pain characteristics, treatments, and ECOG. Multivariable regression analysis showed associations between pain intensity, ECOG, type of breakthrough cancer pain, and opioid dosages. The analyses failed to find a correlation between subjective and objective pain variables. The reported pain perception is unrelated to the objective variables of APA. An in-depth investigation of APA is required to understand the variables to be studied, the operational modalities, and above all, strategies for appropriate integration with data obtained from self-reporting. This study is registered with ClinicalTrials.gov, number (NCT04726228), registered 27 January 2021, https://classic.clinicaltrials.gov/ct2/show/NCT04726228?term=nct04726228&draw=2&rank=1
为癌症疼痛治疗量身定制有效策略,需要对影响疼痛现象的多种因素进行仔细分析,并最终指导治疗。虽然关于自动疼痛评估(APA)的研究非常丰富,但其与临床数据的结合仍未得到充分探索。本研究旨在研究癌症患者队列中主观目标变量与 APA 衍生目标变量之间的潜在相关性。研究采用了多维统计方法。研究考察了人口统计学、临床和疼痛相关变量。客观测量包括皮电活动(EDA)和心电图(ECG)信号。数据分析采用了敏感性分析、多因子分析(MFA)、主成分分层聚类(HCPC)和多变量回归等方法。研究分析了 64 名癌症患者的数据。MFA显示了疼痛强度、类型、东部合作肿瘤学组表现状态(ECOG)、阿片类药物和转移之间的相关性。聚类分析根据疼痛特征、治疗方法和 ECOG 确定了三个不同的患者组别。多变量回归分析显示疼痛强度、ECOG、突破性癌痛类型和阿片类药物剂量之间存在关联。分析未能发现主观和客观疼痛变量之间的相关性。报告的疼痛感觉与 APA 的客观变量无关。需要对 APA 进行深入研究,以了解需要研究的变量、操作模式,尤其是与自我报告数据进行适当整合的策略。本研究已在 ClinicalTrials.gov 注册,编号为 (NCT04726228),注册日期为 2021 年 1 月 27 日,https://classic.clinicaltrials.gov/ct2/show/NCT04726228?term=nct04726228&draw=2&rank=1。
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引用次数: 0
The CAREPAL-8: a short screening tool for multidimensional family caregiver burden in palliative care. CAREPAL-8:姑息关怀中家庭照护者多维负担的简易筛查工具。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-08-02 DOI: 10.1186/s12904-024-01480-w
Anneke Ullrich, Corinna Bergelt, Gabriella Marx, Anne Daubmann, Gesine Benze, Julia Heine, Lisa-Marie Dickel, Feline Wowretzko, Youyou Zhang, Carsten Bokemeyer, Friedemann Nauck, Karin Oechsle

Background: Family caregivers of terminally ill and dying people do not only experience varying levels but also different dimensions of caregiver-related strain and burden. The aim of the study was to develop a short multidimensional screening tool for the detection of burden in family caregivers in palliative care.

Methods: Family caregivers of cancer patients newly admitted to specialist inpatient palliative care (N = 232) completed questionnaires on psychological burden, quality of life, social support and need fulfillment. A latent class mixture model was used to identify discrete classes of family caregivers related to their multidimensional caregiver burden. Multinomial logistic regression analyses were performed to identify the most predictive items from a set of established questionnaires.

Results: Four latent classes of family caregivers were identified: Currently stable caregivers (37%), Caregivers with unmet needs (20%), Psychologically burdened caregivers (30%), and High-risk caregivers (13%). Each of these classes describes a different risk profile of multidimensional family caregiver burden, although family caregivers exhibit high levels of distress across all classes. From a set of 48 items, we identified eight items that predicted the class membership best. These items represent the items of the novel multidimensional screening tool: The 8-item Screening Tool for Family Caregiver Burden in Palliative Care (CAREPAL-8). Except for social support, the items maintained fidelity to the conceptualization of multidimensional caregiver burden used in this study. A preliminary classification system was developed, which has yet to be validated.

Conclusions: This study represents the first step in the establishment of a practical, self-administered screening tool that might help healthcare providers to tailor caregiver care according to their burden in daily practice. Brevity of the 8-item tool might facilitate its use in routine clinical care.

背景:身患绝症和濒临死亡者的家庭照护者不仅经历着不同程度的照护者相关压力和负担,而且还经历着不同维度的压力和负担。本研究旨在开发一种简短的多维度筛查工具,用于检测姑息治疗中家庭照护者的负担:方法:新入院接受姑息治疗专科住院治疗的癌症患者的家庭照护者(N = 232)填写了有关心理负担、生活质量、社会支持和需求满足的问卷。采用潜类混合模型确定了与照顾者多维负担相关的家庭照顾者离散类别。通过多项式逻辑回归分析,从一套既定的调查问卷中找出了最具预测性的项目:结果:确定了家庭照顾者的四个潜在类别:目前情况稳定的照顾者(37%)、需求未得到满足的照顾者(20%)、心理负担重的照顾者(30%)和高风险照顾者(13%)。尽管家庭照顾者在所有类别中都表现出较高的痛苦程度,但每个类别都描述了家庭照顾者多维负担的不同风险特征。从 48 个项目中,我们确定了 8 个最能预测类别成员资格的项目。这些项目代表了新型多维筛查工具的项目:姑息治疗中家庭照顾者负担的 8 项筛选工具(CAREPAL-8)。除社会支持外,这些项目与本研究中使用的多维度照护者负担概念保持一致。初步的分类系统已经建立,但还有待验证:本研究是建立实用、自制筛查工具的第一步,该工具可帮助医疗服务提供者在日常工作中根据护理负担情况为护理者提供量身定制的护理服务。该工具由 8 个项目组成,简洁明了,有助于在日常临床护理中使用。
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引用次数: 0
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BMC Palliative Care
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