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Discussing end-of-life care for persons experiencing severe and persistent mental illness: a qualitative study among stakeholders in Flanders. 讨论临终关怀的人经历严重和持续的精神疾病:在法兰德斯利益相关者的定性研究。
4区 医学 Q2 Nursing Pub Date : 2025-03-01 DOI: 10.21037/apm-24-157
Loïc Moureau, Monica Verhofstadt, Caressa Van Hoe, Joris Vandenberghe, Chantal Van Audenhove, Axel Liégeois

Background: End-of-life care for persons experiencing severe and persistent mental illness (SPMI) is a complex topic that deserves more attention. Despite growing awareness within international scientific research, topics such as palliative psychiatry, the provision of palliative care, and ethical dilemmas, including medical assistance in dying, remain under-researched. The aim of this study is therefore to qualitatively explore the views of different stakeholders on these issues to inform care providers about current challenges and opportunities in care.

Methods: A qualitative study in Flanders, Belgium, involving 73 participants-including care users, caregivers, managers, and experts-explored experiences, needs, challenges and dilemmas regarding end-of-life care for persons experiencing SPMI. Semi-structured interviews were conducted, transcribed, and thematically analyzed.

Results: Explored themes included advance care planning, suicide risk and prevention, euthanasia, the provision of palliative care, bereavement care, and the use of a palliative care approach. Challenges in standardizing advance care planning were noted. Euthanasia requests were rare but ethically complex. The provision of palliative care within familiar settings was favored but posed challenges related to expertise and staffing. Farewell rituals emphasized strong bonds between caregivers and care users. The study highlights the importance of advance care planning, the relative absence of discussions about suicide and euthanasia, and the challenges in providing palliative care. It underscores the need for education, ethical support, and collaboration with palliative care networks.

Conclusions: End-of-life care for persons experiencing SPMI demands a comprehensive approach that addresses ethical considerations, advance care planning, suicide risk, and the provision of palliative care. Policy recommendations include investing in education, establishing ethical support mechanisms, and fostering collaboration with palliative care networks to ensure dignified and compassionate care for this vulnerable population.

背景:重度持续性精神疾病(SPMI)患者的临终关怀是一个复杂的话题,值得更多的关注。尽管国际科学研究日益认识到这一点,但对诸如缓和精神病学、提供缓和治疗以及包括死亡医疗援助在内的道德困境等主题的研究仍然不足。因此,本研究的目的是定性地探讨不同利益相关者对这些问题的看法,以告知护理提供者有关当前护理中的挑战和机遇。方法:在比利时法兰德斯进行了一项定性研究,涉及73名参与者,包括护理使用者、护理人员、管理人员和专家,探讨了SPMI患者在临终关怀方面的经验、需求、挑战和困境。进行了半结构化访谈,并进行了转录和主题分析。结果:探讨的主题包括预先护理计划、自杀风险和预防、安乐死、提供姑息治疗、丧亲护理和使用姑息治疗方法。注意到在使预先护理计划标准化方面的挑战。安乐死请求很少见,但在伦理上很复杂。在熟悉的环境中提供姑息治疗受到青睐,但在专业知识和人员配备方面提出了挑战。告别仪式强调了照顾者和被照顾者之间的紧密联系。该研究强调了预先护理计划的重要性,关于自杀和安乐死的讨论相对缺乏,以及提供姑息治疗的挑战。它强调了教育、道德支持和与姑息治疗网络合作的必要性。结论:临终关怀经历SPMI的人需要一个全面的方法,解决伦理考虑,提前护理计划,自杀风险,并提供姑息治疗。政策建议包括投资教育,建立道德支持机制,促进与姑息治疗网络的合作,以确保这一弱势群体获得有尊严和富有同情心的护理。
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引用次数: 0
The curative potential of stereotactic radiotherapy in oligometastatic colorectal cancer: a narrative review. 立体定向放疗对少转移性结直肠癌的治疗潜力综述。
4区 医学 Q2 Nursing Pub Date : 2025-03-01 DOI: 10.21037/apm-24-170
Hasan Al-Sattar, Esele Okondo, Jakob Hassan-Dinif, Amir Mashia Jaafari, Anojan Augustine, Joao R Galante, Mohamed Metawe, Christos Mikropoulos, Sola Adeleke

Background and objective: Oligometastatic colorectal cancer (CRC), characterised by limited metastatic disease, has traditionally been managed with surgery and chemotherapy. However, advances in stereotactic ablative radiotherapy (SABR), also known as stereotactic body radiotherapy (SBRT), have introduced the possibility of curative outcomes for selected patients with limited metastatic disease. SABR delivers high-dose, highly precise radiation with minimal toxicity, making it an attractive alternative or complement to surgery and systemic therapy. This narrative review evaluates the role of SABR in the management of oligometastatic CRC, and its application in both palliative and curative settings.

Methods: A systematic search of PubMed and Scopus databases (2014-2024) was conducted using search terms including "colorectal cancer", "oligometastatic", "SABR", "SBRT", "palliative", and "radical". Relevant meta-analyses, systematic reviews, and single- and double-arm studies were included.

Key content and findings: SABR demonstrates promising outcomes in both palliative and curative settings for oligometastatic CRC. Trials like SABR-COMET report significant improvements in overall survival (OS) and progression-free survival (PFS) with SABR, achieving a median OS of 50 months compared to 28 months with standard care. SABR is particularly effective for pulmonary metastases, achieving higher local control (LC) rates than hepatic lesions, likely due to differences in tissue radiosensitivity. Palliative SABR has been shown to delay systemic therapy and improve symptom management, with low toxicity rates, while radical SABR offers durable disease control and potential curative outcomes. Despite these benefits, evidence is limited by small cohort sizes, variable dosing regimens, and a lack of CRC-specific randomised trials.

Conclusions: SABR has emerged as a transformative treatment for oligometastatic CRC, providing significant benefits in both palliative and curative settings, although not yet outperforming traditional treatment modalities such as surgery. Future research, including ongoing phase III trials, aims to refine patient selection, optimise dosing protocols, and integrate SABR with systemic treatments to enhance outcomes. With further validation, SABR has the potential to redefine the therapeutic landscape for oligometastatic CRC, offering hope for improved survival and quality of life.

背景和目的:低转移性结直肠癌(CRC)的特点是转移性疾病有限,传统上通过手术和化疗来治疗。然而,立体定向消融放疗(SABR),也称为立体定向体放疗(SBRT)的进展,为有限转移性疾病的特定患者带来了治愈结果的可能性。SABR以最小的毒性提供高剂量,高精度的辐射,使其成为手术和全身治疗的有吸引力的替代或补充。这篇叙述性综述评估了SABR在低转移性结直肠癌管理中的作用,以及它在姑息和治疗环境中的应用。方法:系统检索PubMed和Scopus数据库(2014-2024),检索词包括“colorectal cancer”、“oligometastatic”、“SABR”、“SBRT”、“palliative”和“radical”。包括相关的荟萃分析、系统评价、单组和双组研究。关键内容和发现:SABR在缓解和治疗少转移性结直肠癌方面都显示出有希望的结果。SABR- comet等试验报告了SABR的总生存期(OS)和无进展生存期(PFS)的显著改善,与标准治疗的28个月相比,中位OS达到了50个月。SABR对肺转移尤其有效,比肝病变获得更高的局部控制率,可能是由于组织放射敏感性的差异。姑息性SABR已被证明延迟全身治疗和改善症状管理,毒性率低,而根治性SABR提供持久的疾病控制和潜在的治愈结果。尽管有这些益处,但由于队列规模小、给药方案多变以及缺乏针对crc的随机试验,证据有限。结论:SABR已成为寡转移性结直肠癌的一种变革性治疗方法,在姑息和治疗方面都有显著的益处,尽管尚未优于传统的治疗方式,如手术。未来的研究,包括正在进行的III期试验,旨在改进患者选择,优化给药方案,并将SABR与全身治疗相结合,以提高疗效。随着进一步的验证,SABR有可能重新定义低转移性结直肠癌的治疗前景,为提高生存率和生活质量带来希望。
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引用次数: 0
Tunnelled catheters for palliative care outcomes: study protocol for a prospective, multicentre observational study (PRO ASEPT). 隧道导管对姑息治疗结果的影响:一项前瞻性多中心观察性研究(PRO ASEPT)的研究方案。
4区 医学 Q2 Nursing Pub Date : 2025-03-01 Epub Date: 2025-02-13 DOI: 10.21037/apm-24-147
Sabrina Tofall, Sönke von Weihe, David Benjamin Ellebrecht

Background: Managing pleural effusion and symptomatic ascites in palliative care is crucial for alleviating symptoms and significantly enhancing the quality of life (QoL) for affected patients. Choosing the appropriate treatment modality requires careful consideration of potential risks and benefits, as well as the patient's life expectancy. Tunnelled catheters offer a distinct advantage by allowing insertion in an outpatient setting, thereby reducing or avoiding hospitalization, maximizing time spent at home given the limited life expectancy, and necessitating fewer subsequent pleural procedures for symptom relief. This study protocol outlines a prospective, multicentre study aimed at gaining insights into QoL based on patients' palliative care outcomes. Additionally, it will evaluate the clinical use, safety, and performance of tunnelled catheters and drainage kits in the home environment.

Methods: The multicentre prospective study will be conducted across five sites specialized in thoracic surgery and palliative care in Germany and will include a total of 150 patients. Participants will be patients with pleural effusion or ascites requiring a tunnelled catheter. Each patient will be followed postoperatively for at least 6 months. The primary focus will be on patient-reported palliative care outcomes using the validated Palliative Care Outcome Scale (POS) questionnaire. The POS, designed to assess palliative care needs, consists of 10 questions that evaluate physical, emotional, psychological, and spiritual needs. Additionally, the study will record and evaluate the implantation of the tunnelled catheter, the use of the drainage kit, and monitor short- and long-term complications.

Discussion: The findings from this study will expand our understanding of patients' palliative care outcomes when using tunnelled catheters. Moreover, the results will provide deeper insights into the safety and clinical use of tunnelled catheters.

Trial registration: The study was registered at the German Clinical Trial Register (DRKS): DRKS00031242, at 23 March, 2023.

背景:在姑息治疗中处理胸膜积液和症状性腹水对于减轻症状和显著提高患者的生活质量(QoL)至关重要。选择合适的治疗方式需要仔细考虑潜在的风险和益处,以及患者的预期寿命。隧道导尿管具有明显的优势,它允许在门诊情况下插入,从而减少或避免住院,在有限的预期寿命下最大限度地延长在家的时间,并且需要更少的后续胸膜手术来缓解症状。本研究方案概述了一项前瞻性的多中心研究,旨在根据患者的姑息治疗结果深入了解患者的生活质量。此外,它将评估在家庭环境中隧道导管和引流套件的临床使用、安全性和性能。方法:这项多中心前瞻性研究将在德国五个专门从事胸外科和姑息治疗的地点进行,共包括150名患者。参与者将是需要隧道导管的胸腔积液或腹水患者。每位患者术后随访至少6个月。主要重点将是使用经过验证的姑息治疗结果量表(POS)问卷调查患者报告的姑息治疗结果。POS旨在评估姑息治疗需求,由10个问题组成,评估身体、情感、心理和精神需求。此外,该研究将记录和评估隧道导管的植入,引流套件的使用,并监测短期和长期并发症。讨论:本研究的结果将扩大我们对使用隧道导管时患者姑息治疗结果的理解。此外,该结果将为隧道导管的安全性和临床应用提供更深入的见解。试验注册:该研究于2023年3月23日在德国临床试验注册中心(DRKS)注册:DRKS00031242。
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引用次数: 0
Advancing survivorship care for metastatic cancer: insights from MASCC-ASCO Standards and Recommendations. 推进转移性癌症的生存护理:来自MASCC-ASCO标准和建议的见解。
4区 医学 Q2 Nursing Pub Date : 2025-03-01 DOI: 10.21037/apm-24-144
Muna Alkhaifi, Shing Fung Lee, Malika Peera, Carmen Faouk, Jashmira Bhinder, Gloria H J Chan, Denise S T Cheung, Edward Chow, Charles B Simone, Henry C Y Wong, Jennifer M Jones
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引用次数: 0
Palliative care for elderly patients with advanced lung disease. 老年晚期肺病患者的姑息治疗。
4区 医学 Q2 Nursing Pub Date : 2025-03-01 DOI: 10.21037/apm-25-28
Charles B Simone
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引用次数: 0
Self-expanding metallic stent placement for the palliation of malignant airway complications. 自膨胀金属支架置入缓解恶性气道并发症。
4区 医学 Q2 Nursing Pub Date : 2025-03-01 DOI: 10.21037/apm-24-155
Hiroki Matsumoto, Yuichi Sakairi, Taisuke Kaiho, Terunaga Inage, Takamasa Ito, Kazuhisa Tanaka, Ichiro Yoshino, Hidemi Suzuki

Background: Tracheal stenosis and fistula are critical conditions with severe symptoms necessitating prompt intervention, making tracheal stent insertion a suitable treatment option. This study aimed to describe the efficacy of tracheal stenting using a less invasive flexible bronchoscope for malignant tumors.

Methods: Medical records at Chiba University Hospital from January 2008 to December 2021 were retrospectively examined. During this period, 76 stents were placed in 63 patients. Thirteen patients who underwent tracheal self-expanding metallic stent (SEMS) via flexible bronchoscopy to alleviate palliative symptoms due to malignancy were investigated for clinical outcomes.

Results: The cohort comprised 11 men and two women, and the mean age was 68.7 (range, 60-82) years. Pathologic diagnosis was esophageal cancer in 10 patients, lung cancer in two, and colon cancer in one. Indications for stent insertion were stenosis in six patients, fistulas to neighboring structures in five, and both in two. All patients exhibited airway symptoms, including cough, dyspnea, or pneumonia, and 7 (53.8%) had >50% stenosis on the computed tomography (CT) image. Ultraflex/AERO stents were used in 11/2 patients; the location of insertion was the trachea in 11 patients and both the trachea and bronchus in two. The mean time from stent indication to insertion was 3.6 (range, 0-11) days. Severe complications included membranous tracheal injury, hemoptysis, pneumonia, mediastinitis, and restenosis. Oxygen demand or symptoms improved within 1 week after the procedure in 10 (76.9%) patients. Overall, 10 (76.9%) patients were discharged or transferred to another hospital, while the other 3 (23.1%) died in the hospital without discharge or transfer. Additional chemotherapy was administered to 6 (46.2%) patients. The overall median survival time was 75 days, with a significantly better prognosis observed in 10 patients with symptomatic improvement (107 vs. 3 days, P=0.02) and six eligible for chemotherapy (204 vs. 22 days, P=0.01).

Conclusions: Minimally invasive tracheal stenting using flexible bronchoscopy for malignancy is effective in patients who have undergone tracheal SEMS placement. The prognosis was notably better in patients with symptomatic improvement, particularly when chemotherapy was administered after stenting.

背景:气管狭窄和瘘管是危重疾病,症状严重,需要及时干预,气管支架置入是一种合适的治疗选择。本研究旨在描述气管支架置入术在微创柔性支气管镜下治疗恶性肿瘤的疗效。方法:回顾性分析千叶大学附属医院2008年1月至2021年12月的病历。在此期间,63名患者放置了76个支架。本文对13例经柔性支气管镜行气管自扩张金属支架(SEMS)治疗恶性肿瘤患者的临床疗效进行了研究。结果:该队列包括11名男性和2名女性,平均年龄为68.7岁(60-82岁)。病理诊断为食道癌10例,肺癌2例,结肠癌1例。支架置入指征为狭窄6例,邻近结构瘘管5例,两者均有2例。所有患者均表现出呼吸道症状,包括咳嗽、呼吸困难或肺炎,7例(53.8%)患者在CT图像上出现bbb50 %的狭窄。2例患者使用Ultraflex/AERO支架;11例置入气管,2例置入气管和支气管。从支架指征到置入的平均时间为3.6天(范围0-11天)。严重并发症包括气管膜性损伤、咯血、肺炎、纵隔炎和再狭窄。10例(76.9%)患者术后1周内耗氧量或症状改善。其中出院或转院10例(76.9%),未出院或转院死亡3例(23.1%)。6例(46.2%)患者接受了额外的化疗。总中位生存期为75天,10例患者症状改善(107 vs. 3天,P=0.02), 6例患者符合化疗条件(204 vs. 22天,P=0.01),预后明显改善。结论:柔性支气管镜下微创气管支架置入术治疗恶性肿瘤对气管SEMS置入术患者有效。症状改善的患者预后明显更好,特别是在支架置入术后进行化疗的患者。
{"title":"Self-expanding metallic stent placement for the palliation of malignant airway complications.","authors":"Hiroki Matsumoto, Yuichi Sakairi, Taisuke Kaiho, Terunaga Inage, Takamasa Ito, Kazuhisa Tanaka, Ichiro Yoshino, Hidemi Suzuki","doi":"10.21037/apm-24-155","DOIUrl":"https://doi.org/10.21037/apm-24-155","url":null,"abstract":"<p><strong>Background: </strong>Tracheal stenosis and fistula are critical conditions with severe symptoms necessitating prompt intervention, making tracheal stent insertion a suitable treatment option. This study aimed to describe the efficacy of tracheal stenting using a less invasive flexible bronchoscope for malignant tumors.</p><p><strong>Methods: </strong>Medical records at Chiba University Hospital from January 2008 to December 2021 were retrospectively examined. During this period, 76 stents were placed in 63 patients. Thirteen patients who underwent tracheal self-expanding metallic stent (SEMS) via flexible bronchoscopy to alleviate palliative symptoms due to malignancy were investigated for clinical outcomes.</p><p><strong>Results: </strong>The cohort comprised 11 men and two women, and the mean age was 68.7 (range, 60-82) years. Pathologic diagnosis was esophageal cancer in 10 patients, lung cancer in two, and colon cancer in one. Indications for stent insertion were stenosis in six patients, fistulas to neighboring structures in five, and both in two. All patients exhibited airway symptoms, including cough, dyspnea, or pneumonia, and 7 (53.8%) had >50% stenosis on the computed tomography (CT) image. Ultraflex/AERO stents were used in 11/2 patients; the location of insertion was the trachea in 11 patients and both the trachea and bronchus in two. The mean time from stent indication to insertion was 3.6 (range, 0-11) days. Severe complications included membranous tracheal injury, hemoptysis, pneumonia, mediastinitis, and restenosis. Oxygen demand or symptoms improved within 1 week after the procedure in 10 (76.9%) patients. Overall, 10 (76.9%) patients were discharged or transferred to another hospital, while the other 3 (23.1%) died in the hospital without discharge or transfer. Additional chemotherapy was administered to 6 (46.2%) patients. The overall median survival time was 75 days, with a significantly better prognosis observed in 10 patients with symptomatic improvement (107 vs. 3 days, P=0.02) and six eligible for chemotherapy (204 vs. 22 days, P=0.01).</p><p><strong>Conclusions: </strong>Minimally invasive tracheal stenting using flexible bronchoscopy for malignancy is effective in patients who have undergone tracheal SEMS placement. The prognosis was notably better in patients with symptomatic improvement, particularly when chemotherapy was administered after stenting.</p>","PeriodicalId":7956,"journal":{"name":"Annals of palliative medicine","volume":"14 2","pages":"146-154"},"PeriodicalIF":0.0,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144061915","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Symptom management and ethics needs in patients with cancer and non-cancer advanced diseases. 癌症和非癌症晚期疾病患者的症状管理和伦理需求。
4区 医学 Q2 Nursing Pub Date : 2025-01-01 DOI: 10.21037/apm-25-9
Charles B Simone
{"title":"Symptom management and ethics needs in patients with cancer and non-cancer advanced diseases.","authors":"Charles B Simone","doi":"10.21037/apm-25-9","DOIUrl":"https://doi.org/10.21037/apm-25-9","url":null,"abstract":"","PeriodicalId":7956,"journal":{"name":"Annals of palliative medicine","volume":"14 1","pages":"105-107"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143439829","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Palliative care for patients with chronic kidney disease and severe COVID-19 in Brazil: a retrospective study in a quaternary hospital. 巴西慢性肾脏疾病和重症COVID-19患者的姑息治疗:在一家第四医院的回顾性研究
4区 医学 Q2 Nursing Pub Date : 2025-01-01 DOI: 10.21037/apm-24-99
Tulio L Correa, Mariana Sandoval Terra Campos Guelli, Ricardo Tavares de Carvalho

Background: Patients with chronic kidney disease (CKD) have many special needs in the areas of symptom management, advanced care planning, and end-of-life care. We aimed to evaluate the palliative care (PC) provided to patients with CKD admitted with severe coronavirus disease 2019 (COVID-19) at the Clinics Hospital of the University of Sao Paulo Faculty of Medicine during the first wave of the pandemic.

Methods: A retrospective observational study was conducted in a quaternary hospital. Patients assisted by the PC team with CKD in 2020 were selected according to a protocol for identifying patient at an elevated risk of death who require PC support. The clinical and demographic characteristics, as well as the outcomes, were assessed using electronic records.

Results: A total of 217 patients with CKD were included in the study, of whom 44.2% were admitted to the intensive care unit (ICU). Patients with CKD had an increased relative risk (RR) of death [1.31, 95% confidence interval (CI): 1.12-1.53] but were not assisted by the PC team to a higher degree. Eighty patients with CKD (83.3%) died without being assisted by the PC team. Dialysis treatment and CKD grades were not significantly associated with PC assistance.

Conclusions: Although patients with CKD experienced higher mortality rates, they did not receive PC at a significantly greater frequency and many died without receiving adequate end-of-life care during the COVID-19 pandemic in Brazil.

背景:慢性肾脏疾病(CKD)患者在症状管理、高级护理计划和临终关怀方面有许多特殊需求。我们的目的是评估在第一波大流行期间,圣保罗大学医学院诊所医院为患有2019年严重冠状病毒病(COVID-19)的CKD患者提供的姑息治疗(PC)。方法:在某第四医院进行回顾性观察研究。根据确定需要PC支持的死亡风险较高的患者的协议,选择2020年由PC团队协助的CKD患者。使用电子记录评估临床和人口学特征以及结果。结果:共纳入217例CKD患者,其中44.2%入住重症监护病房(ICU)。CKD患者的相对死亡风险(RR)增加[1.31,95%可信区间(CI): 1.12-1.53],但没有得到PC团队更高程度的协助。80例CKD患者(83.3%)在没有PC团队协助的情况下死亡。透析治疗和CKD分级与PC辅助无显著相关。结论:尽管CKD患者的死亡率较高,但在巴西COVID-19大流行期间,他们接受PC的频率并没有显著提高,许多人在没有接受足够的临终关怀的情况下死亡。
{"title":"Palliative care for patients with chronic kidney disease and severe COVID-19 in Brazil: a retrospective study in a quaternary hospital.","authors":"Tulio L Correa, Mariana Sandoval Terra Campos Guelli, Ricardo Tavares de Carvalho","doi":"10.21037/apm-24-99","DOIUrl":"10.21037/apm-24-99","url":null,"abstract":"<p><strong>Background: </strong>Patients with chronic kidney disease (CKD) have many special needs in the areas of symptom management, advanced care planning, and end-of-life care. We aimed to evaluate the palliative care (PC) provided to patients with CKD admitted with severe coronavirus disease 2019 (COVID-19) at the Clinics Hospital of the University of Sao Paulo Faculty of Medicine during the first wave of the pandemic.</p><p><strong>Methods: </strong>A retrospective observational study was conducted in a quaternary hospital. Patients assisted by the PC team with CKD in 2020 were selected according to a protocol for identifying patient at an elevated risk of death who require PC support. The clinical and demographic characteristics, as well as the outcomes, were assessed using electronic records.</p><p><strong>Results: </strong>A total of 217 patients with CKD were included in the study, of whom 44.2% were admitted to the intensive care unit (ICU). Patients with CKD had an increased relative risk (RR) of death [1.31, 95% confidence interval (CI): 1.12-1.53] but were not assisted by the PC team to a higher degree. Eighty patients with CKD (83.3%) died without being assisted by the PC team. Dialysis treatment and CKD grades were not significantly associated with PC assistance.</p><p><strong>Conclusions: </strong>Although patients with CKD experienced higher mortality rates, they did not receive PC at a significantly greater frequency and many died without receiving adequate end-of-life care during the COVID-19 pandemic in Brazil.</p>","PeriodicalId":7956,"journal":{"name":"Annals of palliative medicine","volume":"14 1","pages":"4-12"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143439803","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Preparedness for the future in patients with relapsed or refractory hematopoietic malignancies in the treatment process: a qualitative study. 在治疗过程中为复发或难治性造血恶性肿瘤患者的未来做好准备:一项定性研究。
4区 医学 Q2 Nursing Pub Date : 2025-01-01 DOI: 10.21037/apm-24-124
Kazuko Akashi, Yoshie Imai, Shingen Nakamura, Yusaku Maeda, Ryohei Sumitani, Masahiro Oura, Kimiko Sogabe, Mamiko Takahashi, Shiro Fujii, Takeshi Harada, Hirokazu Miki

Background: This study aims to clarify how patients with relapsed or refractory (R/R) hematological malignancies prepare for the future and set treatment goals. R/R hematological malignancies often require intensive therapies, including stem cell transplantation and CAR-T cell therapy, which pose high risks of adverse events. Many patients continue aggressive treatment until the end of life for pain relief or even a potential cure, despite the significant symptom burden. Understanding each patient's treatment motivations and preferences is essential to aligning care with their individual values. By examining their experiences, current health status, and treatment goals, this study seeks to provide a basis for holding early discussions on future care, contributing to individualized decision-making support for patients facing limited treatment options and uncertain prognoses.

Methods: A qualitative descriptive study design was used to conduct semi-structured interviews with 16 patients with relapsed/refractory hematopoietic malignancies who were hospitalized for chemotherapy.

Results: The four main themes expressed by the participants were (I) I want to live through the treatment until the end of my life because I know recovery is difficult; (II) my current treatment depends on how much my body can endure; (III) I want to keep trying, but I am at the limit of what I can do now; and (IV) I want to continue even if the treatment is limited because I think it will help someone else.

Conclusions: Patients with hematopoietic malignancies who are undergoing treatment may be motivated by a variety of different factors to continue with treatment. Discussing patients' goals and wishes with respect to treatment is critically important to ensure that such treatment is aligned with patients' preferences.

背景:本研究旨在阐明复发或难治性(R/R)血液恶性肿瘤患者如何为未来做准备并设定治疗目标。R/R恶性血液病通常需要强化治疗,包括干细胞移植和CAR-T细胞治疗,这带来了很高的不良事件风险。许多患者继续积极治疗,直到生命结束的疼痛缓解,甚至潜在的治愈,尽管显著的症状负担。了解每个病人的治疗动机和偏好对于使护理符合他们的个人价值观至关重要。通过检查他们的经历、目前的健康状况和治疗目标,本研究旨在为早期讨论未来护理提供基础,为面临有限治疗选择和不确定预后的患者提供个性化决策支持。方法:采用定性描述性研究设计,对16例住院化疗的复发/难治性造血恶性肿瘤患者进行半结构化访谈。结果:参与者表达的四个主题是:(1)我希望通过治疗活到生命的尽头,因为我知道康复是困难的;(二)我目前的治疗取决于我的身体能承受多少;(三)我想继续努力,但我现在已经达到了能力的极限;(四)即使治疗有限,我也想继续,因为我认为它会帮助别人。结论:正在接受治疗的造血恶性肿瘤患者可能受到各种不同因素的激励而继续接受治疗。讨论患者对治疗的目标和愿望对于确保这种治疗符合患者的偏好至关重要。
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引用次数: 0
The role of community health workers in a collaborative care management intervention for cancer pain management: a feasibility study for a randomized controlled trial. 社区卫生工作者在协作护理管理干预癌症疼痛管理中的作用:一项随机对照试验的可行性研究
4区 医学 Q2 Nursing Pub Date : 2025-01-01 DOI: 10.21037/apm-24-125
Abby M Lohr, Joan M Griffin, Jhenitza P Raygoza, Marcus R Frick, Sarah A Minteer, Jon C Tilburt, Andrea L Cheville, Jessica D Austin

Background: Despite the plausible role for community health workers (CHWs) in supporting historically disenfranchised patients experiencing cancer-related pain, few survivorship care models currently include CHWs. The purpose of our study was to learn from existing CHWs regarding the feasibility of working with rural dwelling and/or Hispanic/Latino patients and their cancer care teams; as well as assessing their anticipated barriers and facilitators of delivering a proposed collaborative care pain intervention [Achieving Equity through SocioCulturally-informed, Digitally-Enabled Cancer Pain managemeNT (ASCENT)].

Methods: Guided by the National Institute on Minority Health and Health Disparities (NIMHD) Research Framework, we recruited experienced CHWs to a mixed-methods feasibility study, including survey, interview and/or focus group. The survey assessed CHWs' comfort level with proposed intervention-related tasks (e.g., working with patients diagnosed with cancer). Interviews and focus groups explored potential training needs, as well as perceived intervention implementation barriers and facilitators. We summarized results using descriptive statistics and a rapid qualitative analytic approach.

Results: In total, 12 CHWs participated. Data included surveys (n=12), interviews (n=8), and a focus group with 4 participants. Overall, participant-CHWs felt confident they could participate in healthcare teams and remotely engage rural-dwelling and/or Hispanic/Latino patients diagnosed with cancer. Implementation barriers and facilitators included: working remotely in an unfamiliar geographic area, resource availability, technology, implementation-specific challenges, and patient level factors (e.g., loss of motivation).

Conclusions: Participant-CHWs viewed serving on a multidisciplinary healthcare team to support Hispanic/Latino and rural-dwelling cancer patients experiencing pain as feasible but identified training and resourcing needs.

背景:尽管社区卫生工作者(chw)在支持历史上被剥夺权利的经历癌症相关疼痛的患者方面发挥了看似合理的作用,但目前很少有幸存者护理模式包括chw。我们研究的目的是向现有的卫生工作者学习与农村居住和/或西班牙/拉丁裔患者及其癌症护理团队合作的可行性;以及评估他们提供拟议的协作护理疼痛干预的预期障碍和促进因素[通过社会文化信息,数字化支持的癌症疼痛管理(ASCENT)实现公平]。方法:在国家少数民族健康和健康差异研究所(NIMHD)研究框架的指导下,我们招募了有经验的chw进行混合方法可行性研究,包括调查、访谈和/或焦点小组。这项调查评估了保健员对拟议的干预相关任务(例如,与被诊断患有癌症的病人一起工作)的适应程度。访谈和焦点小组探讨了潜在的培训需求,以及感知到的干预实施障碍和促进因素。我们使用描述性统计和快速定性分析方法总结结果。结果:共有12名CHWs参与。数据包括调查(n=12)、访谈(n=8)和4名参与者的焦点小组。总体而言,参与者- chw相信他们可以参与医疗团队并远程接触农村居住和/或西班牙/拉丁裔诊断为癌症的患者。实施障碍和促进因素包括:在不熟悉的地理区域远程工作、资源可用性、技术、具体实施的挑战和患者水平因素(例如,失去动力)。结论:参与者- chw认为在多学科医疗团队中服务以支持经历疼痛的西班牙裔/拉丁裔和农村居住的癌症患者是可行的,但确定了培训和资源需求。
{"title":"The role of community health workers in a collaborative care management intervention for cancer pain management: a feasibility study for a randomized controlled trial.","authors":"Abby M Lohr, Joan M Griffin, Jhenitza P Raygoza, Marcus R Frick, Sarah A Minteer, Jon C Tilburt, Andrea L Cheville, Jessica D Austin","doi":"10.21037/apm-24-125","DOIUrl":"10.21037/apm-24-125","url":null,"abstract":"<p><strong>Background: </strong>Despite the plausible role for community health workers (CHWs) in supporting historically disenfranchised patients experiencing cancer-related pain, few survivorship care models currently include CHWs. The purpose of our study was to learn from existing CHWs regarding the feasibility of working with rural dwelling and/or Hispanic/Latino patients and their cancer care teams; as well as assessing their anticipated barriers and facilitators of delivering a proposed collaborative care pain intervention [Achieving Equity through SocioCulturally-informed, Digitally-Enabled Cancer Pain managemeNT (ASCENT)].</p><p><strong>Methods: </strong>Guided by the National Institute on Minority Health and Health Disparities (NIMHD) Research Framework, we recruited experienced CHWs to a mixed-methods feasibility study, including survey, interview and/or focus group. The survey assessed CHWs' comfort level with proposed intervention-related tasks (e.g., working with patients diagnosed with cancer). Interviews and focus groups explored potential training needs, as well as perceived intervention implementation barriers and facilitators. We summarized results using descriptive statistics and a rapid qualitative analytic approach.</p><p><strong>Results: </strong>In total, 12 CHWs participated. Data included surveys (n=12), interviews (n=8), and a focus group with 4 participants. Overall, participant-CHWs felt confident they could participate in healthcare teams and remotely engage rural-dwelling and/or Hispanic/Latino patients diagnosed with cancer. Implementation barriers and facilitators included: working remotely in an unfamiliar geographic area, resource availability, technology, implementation-specific challenges, and patient level factors (e.g., loss of motivation).</p><p><strong>Conclusions: </strong>Participant-CHWs viewed serving on a multidisciplinary healthcare team to support Hispanic/Latino and rural-dwelling cancer patients experiencing pain as feasible but identified training and resourcing needs.</p>","PeriodicalId":7956,"journal":{"name":"Annals of palliative medicine","volume":"14 1","pages":"13-28"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12248872/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143439832","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"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
期刊
Annals of palliative medicine
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