首页 > 最新文献

PROGRESS IN PALLIATIVE CARE最新文献

英文 中文
Evaluating end-of-life chemotherapy for solid tumor and hematologic malignancy patients 评估实体瘤和血液恶性肿瘤患者的临终化疗
IF 1.7 Q4 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2021-01-24 DOI: 10.1080/09699260.2021.1872138
L. Baum, Rachel Rosenblum, B. Scarborough, Cardinale B. Smith
Despite guidelines, chemotherapy near end-of-life (EOL) remains common, particularly in hematologic malignancy (HM). Determinants of EOL chemotherapy for hospitalized cancer patients are not well elucidated. We performed a retrospective cross-sectional descriptive study of patients who died inpatient within two weeks of chemotherapy in 2012 and 2014. By chart review, we identified patient characteristics, estimated performance status, categorized cause of death, and abstracted clinical intent. We identified 102 patients; 65% with HM and 35% with SM. Amongst these patients, rates of ‘Do Not Resuscitate’ status at time of death (P=0.36) were similar; patients with SM were more likely to receive a palliative care consultation (OR=7.6; 95%CI: 2.4–24.3) and less likely to die in intensive care (ICU) (OR=0.17; 95%CI=0.04–0.6). Progression of disease was the most common cause of death in both groups; patients with SM had lower likelihood of dying from a treatment-related cause (OR=0.06; 95%CI=0.01–0.32). Chemotherapy was administered closer to death in HM, 5.6 ± 4.2 days, compared to SM, 8.0 ± 3.7 days (IRR=2.18; 95%CI=0.58–3.78). For patients with HM, documented clinical reasoning emphasized curative intent. The dichotomization of palliative and oncologic care may contribute to worse EOL outcomes, particularly for patients receiving curative intent therapies.
尽管有指导方针,接近生命末期的化疗(EOL)仍然很常见,尤其是在血液系统恶性肿瘤(HM)中。癌症住院患者EOL化疗的决定因素尚不清楚。我们对2012年和2014年在化疗两周内住院死亡的患者进行了回顾性横断面描述性研究。通过图表回顾,我们确定了患者特征、估计的表现状态、分类的死因和抽象的临床意图。我们确定了102名患者;HM患者占65%,SM患者占35%。在这些患者中,死亡时“不复苏”状态的发生率相似(P=0.36);SM患者更有可能接受姑息治疗咨询(OR=7.6;95%CI:2.4–24.3),而在重症监护室(ICU)死亡的可能性较小(OR=0.17;95%CI=0.04–0.6)。疾病进展是两组中最常见的死亡原因;SM患者死于治疗相关原因的可能性较低(OR=0.06;95%CI=0.01–0.32)。HM患者化疗接近死亡的时间为5.6±4.2天,而SM患者为8.0±3.7天(IRR=2.18;95%CI=0.58–3.78)。对于HM患者,有记录的临床推理强调治疗意图。姑息治疗和肿瘤学治疗的二分法可能会导致更糟糕的EOL结果,尤其是对于接受治疗意图治疗的患者。
{"title":"Evaluating end-of-life chemotherapy for solid tumor and hematologic malignancy patients","authors":"L. Baum, Rachel Rosenblum, B. Scarborough, Cardinale B. Smith","doi":"10.1080/09699260.2021.1872138","DOIUrl":"https://doi.org/10.1080/09699260.2021.1872138","url":null,"abstract":"Despite guidelines, chemotherapy near end-of-life (EOL) remains common, particularly in hematologic malignancy (HM). Determinants of EOL chemotherapy for hospitalized cancer patients are not well elucidated. We performed a retrospective cross-sectional descriptive study of patients who died inpatient within two weeks of chemotherapy in 2012 and 2014. By chart review, we identified patient characteristics, estimated performance status, categorized cause of death, and abstracted clinical intent. We identified 102 patients; 65% with HM and 35% with SM. Amongst these patients, rates of ‘Do Not Resuscitate’ status at time of death (P=0.36) were similar; patients with SM were more likely to receive a palliative care consultation (OR=7.6; 95%CI: 2.4–24.3) and less likely to die in intensive care (ICU) (OR=0.17; 95%CI=0.04–0.6). Progression of disease was the most common cause of death in both groups; patients with SM had lower likelihood of dying from a treatment-related cause (OR=0.06; 95%CI=0.01–0.32). Chemotherapy was administered closer to death in HM, 5.6 ± 4.2 days, compared to SM, 8.0 ± 3.7 days (IRR=2.18; 95%CI=0.58–3.78). For patients with HM, documented clinical reasoning emphasized curative intent. The dichotomization of palliative and oncologic care may contribute to worse EOL outcomes, particularly for patients receiving curative intent therapies.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 1","pages":"337 - 341"},"PeriodicalIF":1.7,"publicationDate":"2021-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1872138","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47544121","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 1
Impact of a pediatric palliative care team on resident education in end of life care 儿科姑息治疗团队对临终关怀住院教育的影响
IF 1.7 Q4 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2021-01-24 DOI: 10.1080/09699260.2021.1871578
Brian W. Pennarola, R. MacDonell-Yilmaz, P. Sprinz, T. Renaud
Introduction The presence of Pediatric Palliative Care (PPC) teams and PPC curricula at teaching hospitals are shown to increase resident physician education in pain and symptom management. However, their impact on residents’ comfort in caring for children at the end of life (EOL) is not well studied. We sought to examine whether differences exist in reported levels of experience and education with palliative andEOL care among physicians completing residency before versus after the development of a PPC team. Methods We surveyed 329 pediatrics residents and graduates from our medium-sized children’s hospital about their experiences and education in providing palliative or EOL care to pediatric patients. We compared responses from residents who completed training prior to the development of a PPC team to those who completed training after its implementation. Results 149 individuals (45%) responded. Participants who completed residency during or after the implementation of the PPC team were more likely to agree that they received education about EOL symptom management (K2 = 11.58, P < 0.001) and felt comfortable caring for patients at EOL (K 2 = 5.62, P = 0.02). Discussion Our findings suggest a beneficial impact of PPC team presence on pediatrics resident education. When appropriate, involving of pediatrics residents in the care of children approaching EOL should be supported and encouraged.
儿科姑息治疗(PPC)团队的存在和教学医院的PPC课程被证明可以提高住院医师在疼痛和症状管理方面的教育。然而,它们对居民临终关怀儿童舒适度的影响并没有得到很好的研究。我们试图检查在PPC团队建立之前和之后完成住院医师在姑息治疗和deol护理方面的经验和教育水平是否存在差异。方法对329名中型儿童医院儿科住院医师和毕业生进行调查,了解他们在为儿童患者提供姑息治疗或EOL护理方面的经验和教育。我们比较了在PPC团队建立之前完成培训的住院医生和在PPC团队实施后完成培训的住院医生的反应。结果149人(45%)回答。在PPC团队实施期间或之后完成住院治疗的参与者更有可能同意他们接受了关于EOL症状管理的教育(K2 = 11.58, P < 0.001),并且在EOL护理患者时感到舒适(K2 = 5.62, P = 0.02)。我们的研究结果表明PPC团队的存在对儿科住院医师教育有有益的影响。在适当的情况下,应支持和鼓励儿科住院医师参与照顾接近EOL的儿童。
{"title":"Impact of a pediatric palliative care team on resident education in end of life care","authors":"Brian W. Pennarola, R. MacDonell-Yilmaz, P. Sprinz, T. Renaud","doi":"10.1080/09699260.2021.1871578","DOIUrl":"https://doi.org/10.1080/09699260.2021.1871578","url":null,"abstract":"Introduction The presence of Pediatric Palliative Care (PPC) teams and PPC curricula at teaching hospitals are shown to increase resident physician education in pain and symptom management. However, their impact on residents’ comfort in caring for children at the end of life (EOL) is not well studied. We sought to examine whether differences exist in reported levels of experience and education with palliative andEOL care among physicians completing residency before versus after the development of a PPC team. Methods We surveyed 329 pediatrics residents and graduates from our medium-sized children’s hospital about their experiences and education in providing palliative or EOL care to pediatric patients. We compared responses from residents who completed training prior to the development of a PPC team to those who completed training after its implementation. Results 149 individuals (45%) responded. Participants who completed residency during or after the implementation of the PPC team were more likely to agree that they received education about EOL symptom management (K2 = 11.58, P < 0.001) and felt comfortable caring for patients at EOL (K 2 = 5.62, P = 0.02). Discussion Our findings suggest a beneficial impact of PPC team presence on pediatrics resident education. When appropriate, involving of pediatrics residents in the care of children approaching EOL should be supported and encouraged.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 1","pages":"217 - 222"},"PeriodicalIF":1.7,"publicationDate":"2021-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1871578","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47191871","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 1
Candidates and candidacy: Patient, carer and staff perceptions of referral to a specialist palliative day unit 候选人和候选人资格:患者、护理人员和工作人员对转诊到专业姑息治疗日间病房的看法
IF 1.7 Q4 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2021-01-24 DOI: 10.1080/09699260.2021.1872150
F. Wilson, C. Gardiner
Background Specialist palliative day care can support palliative caregiving for those living in the community with advanced disease. However, how people access specialist palliative day care and why is unclear. This study therefore aims to explore the referral experiences of patients, carers and staff in the context of a specialist palliative day care unit. Design Qualitative study using constant comparative analysis to explore referral experiences to a UK specialist palliative day unit through one-to-one interviews with patients (n=15), family carers (n=6) and staff (n=10) including nurses, medics and managers and focus groups with (n=3 and n=7) specialist palliative care nurses. Findings The three datasets (staff, patients and carers) provide a triangulation of perspectives captured within the core category of ‘managing referral’ and presented as six sub-themes. Staff described referral as an intuitive interaction involving ‘looking for openings’ and ‘getting people through the door’. Patients familiar with the service were persistent in ‘shouting for help’ but most regarded referral with dread, only ‘giving it a go’ following crisis. For family carers referral presented ‘time out/respite’ but also the ‘end-of-the-line’. Conclusions Unclear understandings of services as well as uncertain professional, patient and carers notions of candidacy influence referral to specialist palliative day care.
背景专业姑息日间护理可以支持社区中晚期疾病患者的姑息护理。然而,人们是如何获得专业姑息性日托的,以及为什么还不清楚。因此,本研究旨在探索患者、护理人员和工作人员在专科姑息日托室的转诊体验。设计使用持续比较分析的定性研究,通过对患者(n=15)、家庭护理人员(n=6)和工作人员(n=10)(包括护士、医务人员和管理人员)的一对一访谈,以及与(n=3和n=7)专业姑息治疗护士的焦点小组,探讨转诊到英国专业姑息治疗日间病房的经历。调查结果这三个数据集(工作人员、患者和护理人员)提供了“管理转诊”核心类别中捕获的视角的三角测量,并作为六个子主题呈现。工作人员将推荐描述为一种直观的互动,包括“寻找机会”和“让人们进门”。熟悉这项服务的患者坚持“大声呼救”,但大多数人对转诊感到恐惧,只是在危机发生后才“尝试一下”。对于家庭护理人员来说,转诊提供了“暂停/喘息”,但也提供了“终点线”。结论对服务的不清楚理解以及不确定的专业人员、患者和护理人员的候选观念影响了转诊到专业姑息日间护理。
{"title":"Candidates and candidacy: Patient, carer and staff perceptions of referral to a specialist palliative day unit","authors":"F. Wilson, C. Gardiner","doi":"10.1080/09699260.2021.1872150","DOIUrl":"https://doi.org/10.1080/09699260.2021.1872150","url":null,"abstract":"Background Specialist palliative day care can support palliative caregiving for those living in the community with advanced disease. However, how people access specialist palliative day care and why is unclear. This study therefore aims to explore the referral experiences of patients, carers and staff in the context of a specialist palliative day care unit. Design Qualitative study using constant comparative analysis to explore referral experiences to a UK specialist palliative day unit through one-to-one interviews with patients (n=15), family carers (n=6) and staff (n=10) including nurses, medics and managers and focus groups with (n=3 and n=7) specialist palliative care nurses. Findings The three datasets (staff, patients and carers) provide a triangulation of perspectives captured within the core category of ‘managing referral’ and presented as six sub-themes. Staff described referral as an intuitive interaction involving ‘looking for openings’ and ‘getting people through the door’. Patients familiar with the service were persistent in ‘shouting for help’ but most regarded referral with dread, only ‘giving it a go’ following crisis. For family carers referral presented ‘time out/respite’ but also the ‘end-of-the-line’. Conclusions Unclear understandings of services as well as uncertain professional, patient and carers notions of candidacy influence referral to specialist palliative day care.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 1","pages":"278 - 284"},"PeriodicalIF":1.7,"publicationDate":"2021-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1872150","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47197252","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Maintaining control: A qualitative study of being a patient in need of specialized palliative care during the COVID-19 pandemic 维持控制:新冠肺炎大流行期间需要专业姑息治疗的患者的定性研究
IF 1.7 Q4 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2021-01-18 DOI: 10.1080/09699260.2021.1872139
H. Konradsen, Trine Solander True, H. Vedsegaard, G. Wind, Kristoffer Marsaa
Abstract Being a patient in need of specialized palliative during the COVID-19 pandemic is challenging. Governments around the world have reduced the available health care services as well as restricted in-person meetings between patients, health care professionals, and relatives. The aim of this study was to explore the experiences of patients with specialized palliative care needs during the period of restrictions requiring social distancing due to the COVID-19 pandemic. The analysis of this qualitative study was guided by a grounded theory approach. The participants were patients living in their own homes who were being treated by the outpatient clinic palliative care unit at the Herlev and Gentofte University Hospital in Denmark. Participants’ main concern was maintaining control during the pandemic. They achieved this by aiming to secure a meaningful life by remaining occupied during the day, balancing social contact, contemplating the reopening of society, and seeking help from health care professionals. Participants were concerned about losing control and this concern increased with the reopening of society. Health care professionals must ensure that they provide support and care for patients with specialized palliative care needs when societal restrictions change.
摘要在新冠肺炎大流行期间,作为一名需要专业姑息治疗的患者是具有挑战性的。世界各国政府减少了可用的医疗保健服务,并限制了患者、医疗保健专业人员和亲属之间的面对面交流。本研究的目的是探索在新冠肺炎大流行导致需要保持社交距离的限制期间,有特殊姑息治疗需求的患者的经历。这项定性研究的分析是以一种有根据的理论方法为指导的。参与者是住在自己家里的患者,他们正在丹麦赫列夫和根托夫特大学医院的门诊姑息治疗室接受治疗。参与者主要关心的是在疫情期间保持控制。他们通过在白天保持忙碌、平衡社交、考虑重新开放社会以及寻求医疗保健专业人员的帮助来确保有意义的生活,从而实现了这一目标。与会者担心失去控制,这种担忧随着社会的重新开放而加剧。当社会限制发生变化时,卫生保健专业人员必须确保为有特殊姑息治疗需求的患者提供支持和护理。
{"title":"Maintaining control: A qualitative study of being a patient in need of specialized palliative care during the COVID-19 pandemic","authors":"H. Konradsen, Trine Solander True, H. Vedsegaard, G. Wind, Kristoffer Marsaa","doi":"10.1080/09699260.2021.1872139","DOIUrl":"https://doi.org/10.1080/09699260.2021.1872139","url":null,"abstract":"Abstract Being a patient in need of specialized palliative during the COVID-19 pandemic is challenging. Governments around the world have reduced the available health care services as well as restricted in-person meetings between patients, health care professionals, and relatives. The aim of this study was to explore the experiences of patients with specialized palliative care needs during the period of restrictions requiring social distancing due to the COVID-19 pandemic. The analysis of this qualitative study was guided by a grounded theory approach. The participants were patients living in their own homes who were being treated by the outpatient clinic palliative care unit at the Herlev and Gentofte University Hospital in Denmark. Participants’ main concern was maintaining control during the pandemic. They achieved this by aiming to secure a meaningful life by remaining occupied during the day, balancing social contact, contemplating the reopening of society, and seeking help from health care professionals. Participants were concerned about losing control and this concern increased with the reopening of society. Health care professionals must ensure that they provide support and care for patients with specialized palliative care needs when societal restrictions change.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 1","pages":"186 - 190"},"PeriodicalIF":1.7,"publicationDate":"2021-01-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1872139","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48540315","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 4
Bibliography 参考书目
IF 1.7 Q4 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2021-01-02 DOI: 10.1080/09699260.2021.1867907
{"title":"Bibliography","authors":"","doi":"10.1080/09699260.2021.1867907","DOIUrl":"https://doi.org/10.1080/09699260.2021.1867907","url":null,"abstract":"","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 1","pages":"26 - 56"},"PeriodicalIF":1.7,"publicationDate":"2021-01-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1867907","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46534584","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Reflecting on suffering at the end-of-life 反思生命终结时的痛苦
IF 1.7 Q4 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2021-01-02 DOI: 10.1080/09699260.2021.1852470
M. O’Connor
I was privileged to be awarded a Winston Churchill Fellowship in 2019, which enabled travel to a number of countries where active assistance in dying is legally available. This opportunity afforded...
我很荣幸在2019年获得了温斯顿·丘吉尔奖学金,这使我能够前往一些国家,在这些国家,主动协助死亡是合法的。这个机会提供了……
{"title":"Reflecting on suffering at the end-of-life","authors":"M. O’Connor","doi":"10.1080/09699260.2021.1852470","DOIUrl":"https://doi.org/10.1080/09699260.2021.1852470","url":null,"abstract":"I was privileged to be awarded a Winston Churchill Fellowship in 2019, which enabled travel to a number of countries where active assistance in dying is legally available. This opportunity afforded...","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 1","pages":"1 - 4"},"PeriodicalIF":1.7,"publicationDate":"2021-01-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1852470","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42447977","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 2
Quality of Life and Quality of Care in patients with advanced Chronic Heart Failure (CHF) and advanced Chronic Obstructive Pulmonary Disease (COPD): Implication for Palliative Care from a prospective observational study 晚期慢性心力衰竭(CHF)和晚期慢性阻塞性肺病(COPD)患者的生活质量和护理质量:一项前瞻性观察性研究对姑息治疗的启示
IF 1.7 Q4 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2021-01-02 DOI: 10.1080/09699260.2020.1831248
N. Siouta, A. Heylen, B. Aertgeerts, P. Clement, W. Janssens, J. Van Cleemput, J. Menten
Background: Patients with advanced CHF/COPD and their caregivers share many misconceptions about the life-limiting nature of their disease and when compared to cancer patients, CHF/COPD patients are less likely to receive Palliative Care. Aim: This observational prospective study explores (i) the quality of life (QoL) and symptom control and (ii) the quality of care in CHF/COPD patients in an acute hospital setting. Methods: Eligible patients and their informal caregivers filled in (i) the POS questionnaire that assesses the QoL and the symptom control and (ii) the CanHelp Lite questionnaire that assesses quality of care. These questionnaires were completed at inclusion and after a three-month-follow-up. Results: The majority of the participants were 60-79 years old with mild to moderate symptomatology. Older patients or patients with heavy symptoms declined participation. Both patients and caregivers share common and overall positive beliefs concerning patients' QoL and quality of care. Conclusions: The severity of the healthcare condition of the included patients appears to at odds with their positive evaluation of QoL and quality of care. Possible factors contributing to this finding might be the reluctance of physicians to engage to uncomfortable conversations, the patients' denial of “bad-news” and the overall taboo of communication about death.
背景:晚期慢性心力衰竭/慢性阻塞性肺病患者及其护理人员对其疾病的减轻生命性质有许多误解,与癌症患者相比,慢性心力衰竭/慢阻肺患者接受姑息治疗的可能性较小。目的:这项观察性前瞻性研究探讨了(i)急性医院环境中CHF/COPD患者的生活质量(QoL)和症状控制,以及(ii)护理质量。方法:符合条件的患者及其非正式护理人员填写(i)评估生活质量和症状控制的POS问卷,以及(ii)评估护理质量的CanHelp-Lite问卷。这些问卷是在纳入时和经过三个月的随访后完成的。结果:大多数参与者年龄在60-79岁之间,有轻度至中度症状。老年患者或症状严重的患者拒绝参与。患者和护理人员对患者的生活质量和护理质量有着共同的、总体上积极的信念。结论:纳入患者健康状况的严重程度似乎与他们对生活质量和护理质量的积极评价不一致。促成这一发现的可能因素可能是医生不愿进行令人不舒服的对话,患者否认“坏消息”,以及对死亡沟通的总体禁忌。
{"title":"Quality of Life and Quality of Care in patients with advanced Chronic Heart Failure (CHF) and advanced Chronic Obstructive Pulmonary Disease (COPD): Implication for Palliative Care from a prospective observational study","authors":"N. Siouta, A. Heylen, B. Aertgeerts, P. Clement, W. Janssens, J. Van Cleemput, J. Menten","doi":"10.1080/09699260.2020.1831248","DOIUrl":"https://doi.org/10.1080/09699260.2020.1831248","url":null,"abstract":"Background: Patients with advanced CHF/COPD and their caregivers share many misconceptions about the life-limiting nature of their disease and when compared to cancer patients, CHF/COPD patients are less likely to receive Palliative Care. Aim: This observational prospective study explores (i) the quality of life (QoL) and symptom control and (ii) the quality of care in CHF/COPD patients in an acute hospital setting. Methods: Eligible patients and their informal caregivers filled in (i) the POS questionnaire that assesses the QoL and the symptom control and (ii) the CanHelp Lite questionnaire that assesses quality of care. These questionnaires were completed at inclusion and after a three-month-follow-up. Results: The majority of the participants were 60-79 years old with mild to moderate symptomatology. Older patients or patients with heavy symptoms declined participation. Both patients and caregivers share common and overall positive beliefs concerning patients' QoL and quality of care. Conclusions: The severity of the healthcare condition of the included patients appears to at odds with their positive evaluation of QoL and quality of care. Possible factors contributing to this finding might be the reluctance of physicians to engage to uncomfortable conversations, the patients' denial of “bad-news” and the overall taboo of communication about death.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 1","pages":"11 - 19"},"PeriodicalIF":1.7,"publicationDate":"2021-01-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2020.1831248","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46793619","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 2
Facebook Recruitment for Children with Advanced Cancer and Their Parents: Lessons from a Web-based Pediatric Palliative Intervention Study. Facebook招募晚期癌症儿童及其父母:来自基于网络的儿科姑息干预研究的经验教训
IF 1.7 Q4 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2021-01-01 Epub Date: 2021-03-29 DOI: 10.1080/09699260.2021.1898077
Eunji Cho, Mary Jo Gilmer, Debra L Friedman, Verna L Hendricks-Ferguson, Pamela S Hinds, Terrah Foster Akard

Participant recruitment for pediatric palliative intervention studies is a chronic challenge for researchers. Digital recruitment strategies, or digital technology-assisted recruitment methods used to remotely reach and enroll research subjects, can help address these recruitment challenges for pediatric palliative care clinical trials. This study (a) describes Facebook recruitment procedures targeting children with cancer and their parents for a pediatric palliative intervention randomized clinical trial, (b) reports recruitment results, and (c) discusses successful strategies to recruit pediatric populations via Facebook advertisements. Researchers used Facebook advertisements to recruit children with advanced cancer (aged 7 to 17 years) for a web-based legacy intervention. Between years 2015 and 2018, our research team enrolled 150 child-parent dyads (N= 300) to participate in the web-based legacy program. Results suggest that Facebook advertisements can be a successful tool to access and recruit pediatric populations with life-threatening conditions. Further research is needed to determine how innovative social-media recruitment strategies could be used in other populations of patients with serious illnesses and their caregivers to further advance the science in palliative care.

儿童姑息干预研究的参与者招募对研究人员来说是一个长期的挑战。数字招募策略,或用于远程接触和招募研究对象的数字技术辅助招募方法,可以帮助解决儿科姑息治疗临床试验的这些招募挑战。本研究(a)描述了针对癌症儿童及其父母进行儿童姑息干预随机临床试验的Facebook招募程序,(b)报告了招募结果,(c)讨论了通过Facebook广告招募儿科人群的成功策略。研究人员利用Facebook广告招募患有晚期癌症的儿童(7至17岁),进行基于网络的遗产干预。在2015年至2018年期间,我们的研究团队招募了150对亲子二人组(N= 300)参加基于网络的遗产项目。结果表明,Facebook广告可以成为接触和招募危及生命的儿科人群的成功工具。需要进一步的研究来确定如何将创新的社交媒体招聘策略用于其他严重疾病患者及其护理人员,以进一步推进姑息治疗科学。
{"title":"Facebook Recruitment for Children with Advanced Cancer and Their Parents: Lessons from a Web-based Pediatric Palliative Intervention Study.","authors":"Eunji Cho,&nbsp;Mary Jo Gilmer,&nbsp;Debra L Friedman,&nbsp;Verna L Hendricks-Ferguson,&nbsp;Pamela S Hinds,&nbsp;Terrah Foster Akard","doi":"10.1080/09699260.2021.1898077","DOIUrl":"https://doi.org/10.1080/09699260.2021.1898077","url":null,"abstract":"<p><p>Participant recruitment for pediatric palliative intervention studies is a chronic challenge for researchers. Digital recruitment strategies, or digital technology-assisted recruitment methods used to remotely reach and enroll research subjects, can help address these recruitment challenges for pediatric palliative care clinical trials. This study (a) describes Facebook recruitment procedures targeting children with cancer and their parents for a pediatric palliative intervention randomized clinical trial, (b) reports recruitment results, and (c) discusses successful strategies to recruit pediatric populations via Facebook advertisements. Researchers used Facebook advertisements to recruit children with advanced cancer (aged 7 to 17 years) for a web-based legacy intervention. Between years 2015 and 2018, our research team enrolled 150 child-parent dyads (<i>N=</i> 300) to participate in the web-based legacy program. Results suggest that Facebook advertisements can be a successful tool to access and recruit pediatric populations with life-threatening conditions. Further research is needed to determine how innovative social-media recruitment strategies could be used in other populations of patients with serious illnesses and their caregivers to further advance the science in palliative care.</p>","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 5","pages":"264-271"},"PeriodicalIF":1.7,"publicationDate":"2021-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1898077","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39844832","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 8
Improved Parent-Child Communication following a RCT Evaluating a Legacy Intervention for Children with Advanced Cancer. 一项评估晚期癌症儿童遗留干预的RCT研究改善了亲子沟通。
IF 1.7 Q4 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2021-01-01 Epub Date: 2020-10-20 DOI: 10.1080/09699260.2020.1826778
Terrah Foster Akard, Mary S Dietrich, Debra L Friedman, Cynthia A Gerhardt, Barbara Given, Verna Hendricks-Ferguson, Pamela S Hinds, Sheila H Ridner, Nicole Beckmann, Mary Jo Gilmer

Although legacy-building is a priority for quality palliative care, research has rarely examined effects of legacy interventions in children, particularly their impact on parent-child communication.We examined the impact of a web-based legacy intervention on parent-child communication. We hypothesized that compared to usual care, legacy-making would improve quality of parent-child communication.Between 2015 and 2018, Facebook advertisements were used to recruit families of children (ages 7-17) with relapsed/refractory cancer. Parent-child dyads were randomly assigned to the intervention or usual care group. The intervention website guided children to create digital storyboards over 2 weeks by directing them to answer legacy questions about themselves and upload photographs, videos, and music. Families received a copy of the child's final digital story. Children and parents completed the Parent-Adolescent Communication Scale pre- (T1) and post-intervention (T2). Linear regressions tested for differences in change from T1 to T2 between the groups controlling for T1 values using an alpha of p < .05. Intervention effects were measured using Cohen's d. Ninety-seven parent-child dyads were included for analysis. Changes in parent-child communication were not statistically significantly different between the groups, yet meaningful intervention effects were observed. The strongest effects were observed for improving father-child communication (Cohen's d = -0.22-0.33). Legacy-making shows promise to facilitate improved parent-child communication, particularly for fathers. Future studies should include fathers and measure expression of feelings and parent-child interaction. Providers should continue to facilitate family communication for children with advanced disease and realize that legacy interventions may impact mother-child versus father-child communication differently.

虽然遗产建设是高质量姑息治疗的优先事项,但研究很少检查遗产干预措施对儿童的影响,特别是对亲子沟通的影响。我们研究了基于网络的遗产干预对亲子沟通的影响。我们假设,与常规护理相比,遗赠会提高亲子沟通的质量。在2015年至2018年期间,Facebook广告被用来招募患有复发/难治性癌症的儿童家庭(7-17岁)。亲子二人组随机分为干预组和常规护理组。干预网站引导孩子们在两周内创建数字故事板,指导他们回答关于自己的遗留问题,并上传照片、视频和音乐。每家每户都收到了孩子最后的电子版故事。儿童和家长分别完成干预前(T1)和干预后(T2)的亲子沟通量表。线性回归检验了控制T1值的组之间T1到T2变化的差异,alpha值为p < 0.05。干预效果采用Cohen’s d进行测量。纳入97对亲子二人组进行分析。各组间亲子沟通变化无统计学差异,但干预效果显著。最显著的效果是改善亲子沟通(Cohen’s d = -0.22-0.33)。遗赠有望促进改善亲子沟通,尤其是对父亲而言。未来的研究应包括父亲,并测量情感表达和亲子互动。提供者应继续促进晚期疾病儿童的家庭沟通,并认识到遗留干预措施可能对母子沟通和父子沟通产生不同的影响。
{"title":"Improved Parent-Child Communication following a RCT Evaluating a Legacy Intervention for Children with Advanced Cancer.","authors":"Terrah Foster Akard,&nbsp;Mary S Dietrich,&nbsp;Debra L Friedman,&nbsp;Cynthia A Gerhardt,&nbsp;Barbara Given,&nbsp;Verna Hendricks-Ferguson,&nbsp;Pamela S Hinds,&nbsp;Sheila H Ridner,&nbsp;Nicole Beckmann,&nbsp;Mary Jo Gilmer","doi":"10.1080/09699260.2020.1826778","DOIUrl":"https://doi.org/10.1080/09699260.2020.1826778","url":null,"abstract":"<p><p>Although legacy-building is a priority for quality palliative care, research has rarely examined effects of legacy interventions in children, particularly their impact on parent-child communication.We examined the impact of a web-based legacy intervention on parent-child communication. We hypothesized that compared to usual care, legacy-making would improve quality of parent-child communication.Between 2015 and 2018, Facebook advertisements were used to recruit families of children (ages 7-17) with relapsed/refractory cancer. Parent-child dyads were randomly assigned to the intervention or usual care group. The intervention website guided children to create digital storyboards over 2 weeks by directing them to answer legacy questions about themselves and upload photographs, videos, and music. Families received a copy of the child's final digital story. Children and parents completed the Parent-Adolescent Communication Scale pre- (T1) and post-intervention (T2). Linear regressions tested for differences in change from T1 to T2 between the groups controlling for T1 values using an alpha of p < .05. Intervention effects were measured using Cohen's <i>d</i>. Ninety-seven parent-child dyads were included for analysis. Changes in parent-child communication were not statistically significantly different between the groups, yet meaningful intervention effects were observed. The strongest effects were observed for improving father-child communication (Cohen's <i>d</i> = -0.22-0.33). Legacy-making shows promise to facilitate improved parent-child communication, particularly for fathers. Future studies should include fathers and measure expression of feelings and parent-child interaction. Providers should continue to facilitate family communication for children with advanced disease and realize that legacy interventions may impact mother-child versus father-child communication differently.</p>","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 3","pages":"130-139"},"PeriodicalIF":1.7,"publicationDate":"2021-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2020.1826778","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39166033","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 15
The challenges of establishing a palliative care collaboration with the intensive care unit: How we did it? A prospective observational study 与重症监护室建立姑息治疗合作的挑战:我们是如何做到的?一项前瞻性观察研究
IF 1.7 Q4 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Pub Date : 2020-12-14 DOI: 10.1080/09699260.2020.1852655
C. Poi, M. Koh, Wendy Ong, Y. Wong, Fionna Chunru Yow, H. Tan
Abstract Background Palliative care should be an integral component of comprehensive ICU care for all critically ill patients. Objectives We aimed to study and describe the impact of an ICU-Palliative Care Collaboration using a ICU screening criteria and its influence on referral rates and outcomes. Methods This was a prospective, observational study that included all critically ill patients who were referred to our ICU-Palliative Care Service over a 3-year period from January 2016 to December 2018 in a 1500-bed teaching hospital. Critically ill patients who met the referral criteria would be referred to our ICU-Palliative Care Service. Results A total of 662 critically ill patients were referred during the study period. 398(60.1%) patients had withdrawal of ventilator.595(89.9%) of 662 patients referred to palliative care died. 284(42.9%) patients died in the ICU. The palliative care team continued to care for the remaining 378 patients who were transferred out of the ICU to the general ward. Conclusions Our ICU-Palliative Care service provided care for critically ill patients with palliative care needs in a seamless and holistic manner in both the ICU and post-ICU settings. The establishment of a screening criteria allowed patients with potentially unmet palliative care needs to be identified and referred to palliative care. Active screening and collaborative efforts between the ICU and palliative care team resulted a significant increment in referral rates.
背景姑息治疗应该是所有危重患者ICU综合护理的一个组成部分。我们的目的是研究和描述ICU-姑息治疗合作使用ICU筛查标准的影响及其对转诊率和结果的影响。这是一项前瞻性观察性研究,纳入了2016年1月至2018年12月一家拥有1500张床位的教学医院转介至icu姑息治疗服务的所有危重患者。符合转诊标准的危重病人将被转介到我们的icu姑息治疗服务。结果研究期间共转诊危重患者662例。662例患者中有595例(89.9%)死亡,398例(60.1%)患者停用呼吸机。284例(42.9%)患者在ICU死亡。姑息治疗小组继续照顾剩下的378名从ICU转到普通病房的病人。结论我们的ICU- palliative Care服务在ICU和ICU后的环境中为有姑息治疗需求的危重患者提供了无缝和整体的护理。筛查标准的建立允许潜在未满足姑息治疗需求的患者被识别并转介到姑息治疗。ICU和姑息治疗团队之间的积极筛查和合作努力显著提高了转诊率。
{"title":"The challenges of establishing a palliative care collaboration with the intensive care unit: How we did it? A prospective observational study","authors":"C. Poi, M. Koh, Wendy Ong, Y. Wong, Fionna Chunru Yow, H. Tan","doi":"10.1080/09699260.2020.1852655","DOIUrl":"https://doi.org/10.1080/09699260.2020.1852655","url":null,"abstract":"Abstract Background Palliative care should be an integral component of comprehensive ICU care for all critically ill patients. Objectives We aimed to study and describe the impact of an ICU-Palliative Care Collaboration using a ICU screening criteria and its influence on referral rates and outcomes. Methods This was a prospective, observational study that included all critically ill patients who were referred to our ICU-Palliative Care Service over a 3-year period from January 2016 to December 2018 in a 1500-bed teaching hospital. Critically ill patients who met the referral criteria would be referred to our ICU-Palliative Care Service. Results A total of 662 critically ill patients were referred during the study period. 398(60.1%) patients had withdrawal of ventilator.595(89.9%) of 662 patients referred to palliative care died. 284(42.9%) patients died in the ICU. The palliative care team continued to care for the remaining 378 patients who were transferred out of the ICU to the general ward. Conclusions Our ICU-Palliative Care service provided care for critically ill patients with palliative care needs in a seamless and holistic manner in both the ICU and post-ICU settings. The establishment of a screening criteria allowed patients with potentially unmet palliative care needs to be identified and referred to palliative care. Active screening and collaborative efforts between the ICU and palliative care team resulted a significant increment in referral rates.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 1","pages":"342 - 351"},"PeriodicalIF":1.7,"publicationDate":"2020-12-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2020.1852655","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41528099","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 3
期刊
PROGRESS IN PALLIATIVE CARE
全部 Acc. Chem. Res. ACS Applied Bio Materials ACS Appl. Electron. Mater. ACS Appl. Energy Mater. ACS Appl. Mater. Interfaces ACS Appl. Nano Mater. ACS Appl. Polym. Mater. ACS BIOMATER-SCI ENG ACS Catal. ACS Cent. Sci. ACS Chem. Biol. ACS Chemical Health & Safety ACS Chem. Neurosci. ACS Comb. Sci. ACS Earth Space Chem. ACS Energy Lett. ACS Infect. Dis. ACS Macro Lett. ACS Mater. Lett. ACS Med. Chem. Lett. ACS Nano ACS Omega ACS Photonics ACS Sens. ACS Sustainable Chem. Eng. ACS Synth. Biol. Anal. Chem. BIOCHEMISTRY-US Bioconjugate Chem. BIOMACROMOLECULES Chem. Res. Toxicol. Chem. Rev. Chem. Mater. CRYST GROWTH DES ENERG FUEL Environ. Sci. Technol. Environ. Sci. Technol. Lett. Eur. J. Inorg. Chem. IND ENG CHEM RES Inorg. Chem. J. Agric. Food. Chem. J. Chem. Eng. Data J. Chem. Educ. J. Chem. Inf. Model. J. Chem. Theory Comput. J. Med. Chem. J. Nat. Prod. J PROTEOME RES J. Am. Chem. Soc. LANGMUIR MACROMOLECULES Mol. Pharmaceutics Nano Lett. Org. Lett. ORG PROCESS RES DEV ORGANOMETALLICS J. Org. Chem. J. Phys. Chem. J. Phys. Chem. A J. Phys. Chem. B J. Phys. Chem. C J. Phys. Chem. Lett. Analyst Anal. Methods Biomater. Sci. Catal. Sci. Technol. Chem. Commun. Chem. Soc. Rev. CHEM EDUC RES PRACT CRYSTENGCOMM Dalton Trans. Energy Environ. Sci. ENVIRON SCI-NANO ENVIRON SCI-PROC IMP ENVIRON SCI-WAT RES Faraday Discuss. Food Funct. Green Chem. Inorg. Chem. Front. Integr. Biol. J. Anal. At. Spectrom. J. Mater. Chem. A J. Mater. Chem. B J. Mater. Chem. C Lab Chip Mater. Chem. Front. Mater. Horiz. MEDCHEMCOMM Metallomics Mol. Biosyst. Mol. Syst. Des. Eng. Nanoscale Nanoscale Horiz. Nat. Prod. Rep. New J. Chem. Org. Biomol. Chem. Org. Chem. Front. PHOTOCH PHOTOBIO SCI PCCP Polym. Chem.
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
0
微信
客服QQ
Book学术公众号 扫码关注我们
反馈
×
意见反馈
请填写您的意见或建议
请填写您的手机或邮箱
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
现在去查看 取消
×
提示
确定
Book学术官方微信
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术
文献互助 智能选刊 最新文献 互助须知 联系我们:info@booksci.cn
Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。
Copyright © 2023 Book学术 All rights reserved.
ghs 京公网安备 11010802042870号 京ICP备2023020795号-1