Journal of pain and symptom management最新文献_第10页

Improving Compassionate Extubation Practices in the Pediatric Intensive Care Unit 改善儿童重症监护病房的同情心拔管实践。

IF 3.5 2区医学 Q2 CLINICAL NEUROLOGY

Journal of pain and symptom management

Pub Date : 2025-10-10 DOI: 10.1016/j.jpainsymman.2025.09.029

Elizabeth Rinaldi MD , Debbie Brostoff MSN, CPNP-AC/PC , Robin V. Klein MD , Meredith C. Winter MD

Background

This study was conducted in a free-standing pediatric academic institution in the pediatric intensive care unit (PICU) and cardiothoracic intensive care unit (CTICU), focusing on children with planned compassionate extubation (CE). Prior to the study, variability in CE practices led to inconsistencies in care and communication.

Objectives

Implement and assess the efficacy of a protocol to ensure consistent symptom management, enhance documentation, and promote communication among providers during CE events.

Methods

Pre and post quality improvement project with implementation of a CE protocol in February 2022, including (1) a checklist to standardize orders, documentation, medical management, and provider availability around the time of CE and (2) a postextubation staff debriefing tool. The study was carried out by a multidisciplinary team composed of providers, nurses, respiratory therapists, palliative care specialists, and a child life specialist. The improvement team evaluated CE events for a 12 month period before (January-December 2020) and for 12 months after (February 2022-January 2023) the intervention roll-out date via manual chart review and Research Electronic Data Capture surveys of staff members who participated in the CE. The primary outcome was the compliance with best practices surrounding documentation and clinical interventions at the time of CE. Secondary outcomes included staff satisfaction with the CE process and rate of debriefings.

Results

There were 18 preintervention events and 26 postintervention CE events that underwent chart review. 53 surveys were reviewed, 20 preintervention and 33 postintervention. There was a significant increase in the appropriate placement of extubation orders (6% prior to protocol, 69% at study conclusion), improvement in timely advance care plan documentation (89% prior to protocol, 100% at study conclusion), and increase in cessation of vasoactive infusions at the time of extubation (78% prior to protocol, 100% at study conclusion). The rates of debriefs remained similar before and after protocol implementation (65% and 67% respectively). Overall, the protocol was well received by ICU staff, over 90% of staff surveys showed positive feedback on patient and provider comfort during CE.

Conclusions

A CE protocol improved documentation and communication around pediatric end-of-life care. Future improvements should focus on exploring the barriers to postextubation debriefings.

背景：本研究在独立的儿科学术机构儿科重症监护室（PICU）和心胸重症监护室（CTICU）进行，重点研究计划体恤拔管（CE）的儿童。在这项研究之前，CE实践的可变性导致了护理和沟通的不一致。目标：实施和评估协议的有效性，以确保一致的症状管理，加强文档记录，并促进CE事件期间提供者之间的沟通。方法：在2022年2月实施CE协议的前后质量改进项目，包括(1)在CE期间标准化订单、文件、医疗管理和提供者可用性的清单和(2)拔管后工作人员报告工具。这项研究是由一个多学科团队进行的，该团队由提供者、护士、呼吸治疗师、姑息治疗专家和儿童生活专家组成。改进小组通过对参与行政长官的工作人员进行手工图表审查和研究电子数据采集调查，对干预措施推出日期之前（2020年1月至12月）和之后（2022年2月至2023年1月）的12个月的行政长官事件进行了评估。主要结果是CE时对文献和临床干预的最佳实践的依从性。次要结果包括员工对CE过程的满意度和汇报率。结果：有18个干预前事件和26个干预后CE事件进行了图表回顾。我们回顾了53份调查，其中20份是干预前调查，33份是干预后调查。拔管订单的适当放置显著增加（方案前6%，研究结束时69%），及时提前护理计划文件的改善（方案前89%，研究结束时100%），拔管时血管活性输注的停止增加（方案前78%，研究结束时100%）。执行协议前后的汇报率保持相似（分别为65%和67%）。总体而言，该方案得到了ICU员工的好评，超过90%的员工调查显示，在CE期间，患者和提供者的舒适度得到了积极的反馈。结论：CE协议改善了儿童临终关怀的文件记录和沟通。未来的改进应侧重于探索拔管后述情的障碍。

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引用次数: 0

Hospice Use and Aggressive End-of-Life Care Among Cancer and Non-Cancer Decedents in Taiwan 台湾癌症与非癌症病患临终关怀之使用与积极临终关怀。

IF 3.5 2区医学 Q2 CLINICAL NEUROLOGY

Journal of pain and symptom management

Pub Date : 2025-10-09 DOI: 10.1016/j.jpainsymman.2025.09.026

Chun-Li Wang MD, PhD , Chiann-Yi Hsu MSc , Chia-Yen Lin MD, PhD

Context

Palliative care has expanded to include noncancer populations, yet disparities in hospice access and end-of-life (EOL) care quality between cancer and noncancer patients remain.

Objectives

To examine 10-year trends and determinants of hospice use and aggressive EOL care among cancer and hospice-eligible noncancer decedents in Taiwan.

Methods

This retrospective study included 15,546 adult inpatients who died or were terminally discharged from a tertiary center between 2010 and 2019. Patients were classified as cancer or hospice-eligible noncancer based on Taiwan’s National Health Insurance criteria. Hospice enrollment and 15 indicators of aggressive EOL care were assessed within the last 28 days of life. Linear and logistic regression identified trends and predictors.

Results

Hospice utilization increased significantly over time in both cancer and noncancer groups. For cancer decedents, hospice enrollment rose from 6.2% in 2010 to 52.3% in 2019 (β = 0.94, P < 0.001) while noncancer patients showed a more modest increase from 0.6% to 16.2% (β = 0.81, P < 0.001). Noncancer patients consistently exhibited higher aggressive-care scores (mean 5.2 vs. 3.6, P < 0.001), particularly in ICU admission, mechanical ventilation, vasopressor use, and CPR. Cancer diagnosis (aOR = 0.33), receipt of hospice care (aOR = 0.46), and self-signed DNR (aOR = 0.41) were independently associated with lower odds of receiving high-intensity EOL care.

Conclusions

Despite improvement, noncancer patients remain less likely to access hospice and more likely to receive aggressive treatments. Enhanced prognostic recognition and equitable palliative integration are needed.

背景：姑息治疗已经扩展到包括非癌症人群，然而癌症和非癌症患者在临终关怀和临终关怀（EOL）质量方面仍然存在差异。目的：探讨台湾地区癌症及符合临终关怀条件的非癌症死者，其临终关怀使用及积极生命生命护理的10年趋势及决定因素。方法：本回顾性研究纳入了2010年至2019年在三级医疗中心死亡或临终出院的15546名成年住院患者。根据台湾的国民健康保险标准，将患者分为癌症或符合临终关怀条件的非癌症。在生命的最后28天内评估临终关怀登记和15项积极的EOL护理指标。线性和逻辑回归确定了趋势和预测因素。结果：随着时间的推移，癌症组和非癌症组的临终关怀使用率显著增加。对于癌症死者，安宁疗护的登记人数从2010年的6.2%上升到2019年的52.3% （β = 0.94）。结论：尽管有所改善，但非癌症患者仍然不太可能获得安宁疗护，更有可能接受积极的治疗。需要加强预后识别和公平的姑息治疗整合。

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引用次数: 0

When Hospice Referrals are Placed to Improve Acute Care Hospital Mortality Metrics 当安宁疗护转介被放置以改善急症护理医院死亡率指标。

IF 3.5 2区医学 Q2 CLINICAL NEUROLOGY

Journal of pain and symptom management

Pub Date : 2025-10-09 DOI: 10.1016/j.jpainsymman.2025.10.002

Gina M. Piscitello MD, MS , Emily Martin MD, MS , Gregg A. Robbins-Welty MD, MS , Ryan Baldeo MPAS, MSPC, PA-C , Joseph Shega MD , Michael T. Huber MD, MS

引用次数: 0

Palliative Care for Advanced Liver Disease: Hepatology and Palliative Care Specialists Experiences 晚期肝病的姑息治疗：肝病学和姑息治疗专家的经验。

IF 3.5 2区医学 Q2 CLINICAL NEUROLOGY

Journal of pain and symptom management

Pub Date : 2025-10-08 DOI: 10.1016/j.jpainsymman.2025.09.028

Nicholas Hoppmann MD , Marie Bakitas DNSc, RN , Macy Stockdill PhD, RN , Jan DeNofrio PhD , Victor Navarro MD, MHCM , Manisha Verma MD, MPH

Context

People with advanced liver disease (ALD) face progressive symptoms and may benefit from palliative care (PC); but optimal care models remain unknown.

Objectives

To describe PC-trained hepatologists and board-certified PC specialists experiences with integrating PC into ALD care.

Methods

We conducted an embedded qualitative evaluation study, within the 19-site, randomized PAL-LIVER comparative effectiveness trial, to understand clinicians’ perspectives on providing integrated PC in ALD. Semi-structured interviews, conducted between March 23, 2020, and July 1, 2022, were transcribed verbatim, coded, and analyzed to generate themes about their experiences.

Results

Clinicians (17 = hepatologists; 15 = PC providers) with mean age (SD) of 47.3 (8.8) years, 65.3% women, 78.1% White, 68.4% physicians, and 25% nurse practitioners; 43.7 % had been in practice ≤10 years. Shared themes included: 1) Cross-disciplinary primary PC and ALD education is central to PC integration; and 2) Providing PC takes time. Hepatologists unique themes were: 1) Navigating the intersection of primary and specialty PC, and 2) Increased awareness of caregivers’ needs. PC specialists’ unique themes were: 1) Misperceptions of PC, and 2) Characteristics of hepatology-palliative collaborations.

Conclusions

Future PC implementation into routine ALD care will require cross-disciplinary education, adjustments to hepatologists clinical schedules to allocate time to assess and address patient and caregiver PC needs and to discern which patients are best managed by a trained hepatologist vs a PC specialist. On-going misperceptions about the purpose of PC were addressed and facilitated by interdisciplinary collaboration. Our results will guide future efforts to scale PC integration into routine ALD management.

Clinicaltrials.gov NCT03540771

背景：晚期肝病（ALD）患者面临进行性症状，可能受益于姑息治疗（PC）；但最佳护理模式仍然未知。目的：描述PC训练有素的肝病学家和委员会认证的PC专家将PC整合到ALD护理中的经验。方法：我们进行了一项嵌入的定性评价研究，在19个地点的随机PAL-LIVER比较有效性试验中，了解临床医生对ALD提供综合PC的看法。在2020年3月23日至2022年7月1日期间进行的半结构化访谈，被逐字记录、编码和分析，以生成关于他们经历的主题。结果：临床医生（17名肝病学家，15名PC提供者）平均年龄（SD）为47.3（8.8）岁，女性占65.3%，白人占78.1%，内科医生占68.4%，执业护士占25%；实习≤10年的占43.7%。共享的主题包括：1)跨学科的初级PC和ALD教育是PC集成的核心；2)提供PC需要时间。肝病学家的独特主题是：1)导航初级和专业PC的交叉点，以及2)提高对护理者需求的认识。肝病专家的独特主题是：1)对肝病的误解，以及2)肝病学-姑息治疗合作的特点。结论：未来将PC应用于ALD的常规治疗将需要跨学科的教育，调整肝病学家的临床时间表，以分配时间来评估和解决患者和护理人员的PC需求，并辨别哪些患者最好由训练有素的肝病学家和PC专家管理。跨学科合作解决并促进了对PC目的的持续误解。我们的研究结果将指导未来将PC集成到常规ALD管理中的努力。临床试验：gov NCT03540771。

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引用次数: 0

Mental Healthcare Delivery in Palliative Care: Patient and Caregiver Perspectives 姑息治疗中的精神卫生保健服务：患者和护理者的观点。

IF 3.5 2区医学 Q2 CLINICAL NEUROLOGY

Journal of pain and symptom management

Pub Date : 2025-10-08 DOI: 10.1016/j.jpainsymman.2025.10.001

Mia Pattillo MD , Jeffers Guthrie BA , Molly A. Nowels PhD , Maureen Ekwebelem BS , Karolina Sadowska MD , Milagros Silva MD , M. Carrington Reid MD, PhD , Daniel Shalev MD

Background

Palliative care (PC) aims to improve quality of life for individuals with serious illness, yet mental health needs in this population often remain underaddressed. Currently, little is known about how patients and caregivers perceive the role of mental health services within PC.

Objectives

To explore patient and caregiver perspectives on 1) current delivery of mental health support in PC for serious medical illnesses and 2) preferences for integrated specialty mental health services.

Methods

We conducted semistructured interviews with 23 patients receiving ambulatory PC and 11 caregivers at an academic medical center. Interviews explored experiences with mental health care, perceived roles of PC, and preferences for integration. Transcripts were analyzed using thematic analysis.

Results

Participants described strong therapeutic relationships with PC clinicians, who offered informal mental health support through conversations, medication management, and referrals. However, many were uncertain whether mental health care formally fell within providers’ roles. Both patients and caregivers expressed broad support for integrated mental health services, citing benefits such as improved care coordination, streamlined logistics, and access to clinicians with knowledge about serious illness. Caregivers emphasized their own emotional burdens and advocated for inclusion as recipients of mental health support.

Conclusion

Patients and caregivers view integrated mental healthcare as a valuable addition to PC. Integration models should include specialist mental health providers, address caregiver needs, and offer flexible delivery formats. PC’s transdiagnostic scope, interdisciplinary structure, and psychosocial orientation make it a strategic site for integrated care.

背景：姑息治疗旨在改善严重疾病患者的生活质量，但这一人群的心理健康需求往往未得到充分解决。目前，关于患者和护理人员如何看待精神卫生服务在姑息治疗中的作用，人们知之甚少。目的：探讨患者和护理人员对(1)目前在重症姑息治疗中提供心理健康支持的看法，以及(2)对综合专业心理健康服务的偏好。方法：我们对一家学术医疗中心接受门诊姑息治疗的23名患者和11名护理人员进行了半结构化访谈。访谈探讨了精神卫生保健的经验，姑息治疗的感知角色，以及对整合的偏好。使用主题分析对转录本进行分析。结果：参与者描述了与姑息治疗临床医生的牢固治疗关系，他们通过对话、药物管理和转诊提供非正式的心理健康支持。然而，许多人不确定精神卫生保健是否正式属于提供者的职责范围。患者和护理人员都对综合精神卫生服务表示了广泛的支持，并列举了诸如改善护理协调、简化后勤以及获得对严重疾病有了解的临床医生等好处。护理人员强调他们自己的情感负担，并主张将其纳入心理健康支持的接受者。结论：患者和护理人员认为综合精神保健是姑息治疗的一个有价值的补充。整合模式应包括专业的精神卫生提供者，解决照顾者的需求，并提供灵活的交付形式。姑息治疗的跨诊断范围、跨学科结构和社会心理取向使其成为综合护理的战略场所。

{"title":"Mental Healthcare Delivery in Palliative Care: Patient and Caregiver Perspectives","authors":"Mia Pattillo MD , Jeffers Guthrie BA , Molly A. Nowels PhD , Maureen Ekwebelem BS , Karolina Sadowska MD , Milagros Silva MD , M. Carrington Reid MD, PhD , Daniel Shalev MD","doi":"10.1016/j.jpainsymman.2025.10.001","DOIUrl":"10.1016/j.jpainsymman.2025.10.001","url":null,"abstract":"<div><h3>Background</h3><div>Palliative care (PC) aims to improve quality of life for individuals with serious illness, yet mental health needs in this population often remain underaddressed. Currently, little is known about how patients and caregivers perceive the role of mental health services within PC.</div></div><div><h3>Objectives</h3><div>To explore patient and caregiver perspectives on 1) current delivery of mental health support in PC for serious medical illnesses and 2) preferences for integrated specialty mental health services.</div></div><div><h3>Methods</h3><div>We conducted semistructured interviews with 23 patients receiving ambulatory PC and 11 caregivers at an academic medical center. Interviews explored experiences with mental health care, perceived roles of PC, and preferences for integration. Transcripts were analyzed using thematic analysis.</div></div><div><h3>Results</h3><div>Participants described strong therapeutic relationships with PC clinicians, who offered informal mental health support through conversations, medication management, and referrals. However, many were uncertain whether mental health care formally fell within providers’ roles. Both patients and caregivers expressed broad support for integrated mental health services, citing benefits such as improved care coordination, streamlined logistics, and access to clinicians with knowledge about serious illness. Caregivers emphasized their own emotional burdens and advocated for inclusion as recipients of mental health support.</div></div><div><h3>Conclusion</h3><div>Patients and caregivers view integrated mental healthcare as a valuable addition to PC. Integration models should include specialist mental health providers, address caregiver needs, and offer flexible delivery formats. PC’s transdiagnostic scope, interdisciplinary structure, and psychosocial orientation make it a strategic site for integrated care.</div></div>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":"71 1","pages":"Pages 168-179"},"PeriodicalIF":3.5,"publicationDate":"2025-10-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145274941","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"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

Author Response to Comment on: “Deep Continuous Sedation Until Death and Experience of Relatives and Healthcare Providers: A Systematic Review” 作者对以下评论的回应：“深度持续镇静直到死亡和亲属和医疗保健提供者的经验：系统回顾”。

IF 3.5 2区医学 Q2 CLINICAL NEUROLOGY

Journal of pain and symptom management

Pub Date : 2025-10-06 DOI: 10.1016/j.jpainsymman.2025.09.024

Marie Locatelli MD , Cécile Flahault PhD , Léonor Fasse PhD

引用次数: 0

Assessment of a Zero-Shot Large Language Model in Measuring Documented Goals-of-Care Discussions 在测量记录的护理目标讨论中的零射击大语言模型的评估。

IF 3.5 2区医学 Q2 CLINICAL NEUROLOGY

Journal of pain and symptom management

Pub Date : 2025-10-06 DOI: 10.1016/j.jpainsymman.2025.09.025

Robert Y. Lee MD, MS , Kevin S. Li MS , James Sibley BS , Trevor Cohen MBChB, PhD , William B. Lober MD, MS , Danae G. Dotolo PhD, MSW, MA , Erin K. Kross MD

Context

Goals-of-care (GOC) discussions and their documentation are important process measures in palliative care. However, existing natural language processing (NLP) models for identifying such documentation require costly task-specific training data. Large language models (LLMs) hold promise for measuring such constructs with fewer or no task-specific training data.

Objective

To evaluate the performance of a publicly available LLM with no task-specific training data (zero-shot prompting) for identifying documented GOC discussions.

Methods

We compared performance of two NLP models in identifying documented GOC discussions: Llama 3.3 using zero-shot prompting; and, a task-specific BERT (Bidirectional Encoder Representations from Transformers)-based model trained on 4,642 manually annotated notes. We tested both models on records from a series of clinical trials enrolling adult patients with chronic life-limiting illness hospitalized over 2018-2023. We evaluated the area under the receiver operating characteristic curve (AUC), area under the precision-recall curve (AUPRC), and maximal F₁ score, for both note-level and patient-level classification over a 30-day period.

Results

In our text corpora, GOC documentation represented <1% of text and was found in 7.3-9.9% of notes for 23-37% of patients. In a 617-patient held-out test set, Llama 3.3 (zero-shot) and BERT (task-specific, trained) exhibited comparable performance in identifying GOC documentation (Llama 3.3: AUC 0.979, AUPRC 0.873, and F₁ 0.83; BERT: AUC 0.981, AUPRC 0.874, and F₁ 0.83).

Conclusion

A zero-shot large language model with no task-specific training performed similarly to a task-specific trained BERT model in identifying documented goals-of-care discussions. This demonstrates the promise of LLMs in measuring novel clinical research outcomes.

背景：护理目标（GOC）的讨论和他们的文件是姑息治疗的重要过程措施。然而，现有的用于识别此类文档的自然语言处理（NLP）模型需要昂贵的特定于任务的训练数据。大型语言模型（llm）有望使用更少或没有特定于任务的训练数据来度量这些结构。目的：评估没有特定任务训练数据（零射击提示）的公开可用LLM的性能，以识别记录的GOC讨论。方法：我们比较了两种NLP模型在识别GOC讨论记录方面的性能：Llama 3.3使用零射击提示；以及一个基于任务特定的BERT（来自变形金刚的双向编码器表示）的模型，该模型训练了4,642个手动注释的注释。我们根据2018-2023年住院的慢性限制生命疾病成年患者的一系列临床试验记录对这两种模型进行了测试。在30天的时间里，我们评估了受试者工作特征曲线下的面积（AUC）、精确召回率曲线下的面积（AUPRC）和最大F1评分，用于笔记水平和患者水平的分类。结果：在我们的文本语料库中，GOC文档代表1 0.83；BERT: AUC 0.981, AUPRC 0.874, F1 0.83)。结论：没有特定任务训练的零射击大型语言模型在识别记录的护理目标讨论方面的表现与特定任务训练的BERT模型相似。这证明了法学硕士在衡量新的临床研究成果方面的前景。

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引用次数: 0

Addressing Palliative Care Gaps for Rare Congenital Disease in Adults: CM-AVM2 as an Example 解决成人罕见先天性疾病的姑息治疗差距：CM-AVM2为例。

IF 3.5 2区医学 Q2 CLINICAL NEUROLOGY

Journal of pain and symptom management

Pub Date : 2025-10-04 DOI: 10.1016/j.jpainsymman.2025.09.027

Matthew W. Kenaston BS , Ryan Baldeo MPAS, PA-C , Tyler K. Murphy MD

Capillary malformation–arteriovenous malformation type 2 (CM-AVM2) is a rare vascular disorder marked by complex, progressive symptoms and limited treatment options. As more individuals with rare diseases reach adulthood, palliative care plays an essential role in supporting quality of life when disease-directed therapies begin to fail. We present a young adult male with EPHB4-positive CM-AVM2, transferred to our tertiary care center for progressive malnutrition, refractory diarrhea, and worsening abdominal pain despite extensive subspecialty care. His hospitalization was marked by escalating symptom burden, limited response to medical therapies, and increasing emotional distress for both patient and family. Palliative care was consulted to assist with pain control and symptom management, with initial reluctance for discussing goals of care (GOC). Through medication optimization, dynamic communication, and consistent interdisciplinary collaboration, the team helped stabilize aspects of his comfort and gradually facilitated GOC discussions. Our case emphasizes the value of integrating palliative care in rare disease management, particularly when longstanding treatments are refractory. We further discuss how palliative care in this setting differs from standard frameworks, requiring proactive use of disease-specific resources and protracted, anticipatory care planning to optimize quality of life.

2型毛细血管畸形-动静脉畸形（CM-AVM2）是一种罕见的血管疾病，其特征是复杂的进行性症状和有限的治疗选择。随着越来越多的罕见病患者成年，当针对疾病的治疗开始失效时，姑息治疗在支持生活质量方面发挥着至关重要的作用。我们报告了一位年轻的成年男性，患有ephb4阳性CM-AVM2，由于进行性营养不良，难治性腹泻和腹痛恶化而转移到我们的三级保健中心，尽管进行了广泛的亚专科护理。他住院的特点是症状负担加重，对药物治疗反应有限，患者和家属的情绪困扰增加。姑息治疗是为了帮助疼痛控制和症状管理，最初不愿意讨论护理目标（GOC）。通过药物优化、动态沟通和持续的跨学科合作，团队帮助稳定了他的舒适度，并逐渐促进了GOC的讨论。我们的病例强调了在罕见病管理中整合姑息治疗的价值，特别是当长期治疗难治性时。我们进一步讨论了这种情况下的姑息治疗与标准框架的不同之处，姑息治疗需要主动使用特定疾病的资源和长期的、预期的护理计划来优化生活质量。

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引用次数: 0

In the Field: Visiting Peer Institutions to Inform Pediatric Palliative Care Program Redevelopment 实地考察：访问同行机构为儿科姑息治疗项目的再开发提供信息。

IF 3.5 2区医学 Q2 CLINICAL NEUROLOGY

Journal of pain and symptom management

Pub Date : 2025-10-01 DOI: 10.1016/j.jpainsymman.2025.09.012

Ross W. Cleveland MD , Chelsea Heneghan MSN, CNP, MBA, DNP , Suzanne Gouda MD , Shih-Ning Liaw MD , Terrance Murphy MD , Vanessa Battista DNP, MBA, CPNP , Eleanor Frechette MSW, LICSW , Carlie Larocque , Abby R. Rosenberg MD, MS, MA

Context

The heterogeneity of pediatric palliative care (PPC) programs presents challenges in forming a generalized model for growth. We developed and implemented a system to visit and learn from peer institutions to inform our own program’s revision and expansion.

Objectives

To describe the use of structured field trips to peer programs in North America to inform program development.

Methods

Our procedure involved three steps: First, “organization” included choosing visit sites, outreach and collaboration to plan logistics, development of a standardized approach, and creating inter-disciplinary field trip teams to ensure diverse PPC perspectives during each visit. Second, “conduction” included the field trips, creating a semi-structured debriefing interview guide aimed at uncovering common tensions, and performing interviews with those who went on each trip. Third, “application” involved analyzing interview data to identify and name key tensions, sharing those tension points with the team, and centering those points in a clinical model redesign.

Results

We completed 7 field trips, including 16 interdisciplinary members of our team. Analysis of our debriefing interviews yielded 2 primary and 5 sub-themes/tension points. Focusing on recognizing, accepting, mitigating, or eliminating those tension points during a clinical model redesign led to the creation of several formative changes to our team structure. The field trips took 8 months from beginning to delivery of a new clinical model.

Conclusions

Field trips to peer PPC teams highlight both shared and unique strengths and challenges PPC teams experience. Knowledge gained from trips may enable creative and informed guidance of PPC programmatic growth and evolution.

背景：儿科姑息治疗（PPC）项目的异质性在形成一个广义的增长模型方面提出了挑战。我们开发并实施了一个访问和向同行机构学习的系统，为我们自己的项目的修订和扩展提供信息。目的：描述对北美同行项目进行有组织的实地考察，为项目发展提供信息。方法：我们的程序包括三个步骤：首先，“组织”包括选择访问地点，外联和合作计划后勤，制定标准化方法，以及创建跨学科的实地考察团队，以确保每次访问期间不同的PPC观点。其次，“传导”包括实地考察，创建一份半结构化的述职采访指南，旨在揭示常见的紧张关系，并对每次旅行的参与者进行采访。第三，“应用”包括分析访谈数据，以识别和命名关键紧张点，与团队分享这些紧张点，并将这些紧张点集中在临床模型重新设计中。结果：我们完成了7次实地考察，其中包括我们团队的16名跨学科成员。我们对汇报采访的分析得出了2个主要主题和5个次要主题/紧张点。在临床模型重新设计期间，专注于识别、接受、减轻或消除这些紧张点，导致了我们团队结构的几个形成性变化。从开始到交付新的临床模型，实地考察耗时8个月。结论：对同行PPC团队的实地考察突出了PPC团队共同的和独特的优势和挑战。从旅行中获得的知识可以为PPC项目的发展和演变提供创造性和明智的指导。

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引用次数: 0

End-of-Life Symptoms After Stroke: A Mixed Methods Study 中风后的临终症状：一项混合方法研究

IF 3.5 2区医学 Q2 CLINICAL NEUROLOGY

Journal of pain and symptom management

Pub Date : 2025-09-29 DOI: 10.1016/j.jpainsymman.2025.09.023

Anna-Christin Willert MD , Meghan Romba MD , Sumayyah M. Khan MD , William T. Longstreth Jr MD , Claire J. Creutzfeldt MD

Context

Stroke kills 160,000 patients annually in the US, with most deaths occurring in the hospital after a decision to withhold or withdraw life-sustaining treatment (WLST). Little is known about the experience at the end-of-life of patients with stroke, some of whom are awake, and of their families.

Objectives

To characterize end-of-life symptoms in patients with stroke, and to better understand the experience of these patients and their families.

Methods

In this single-center, mixed-methods retrospective quality improvement study, we included all patients hospitalized with acute stroke who died in 2022 after WLST. Basic characteristics were collected for descriptive analysis. Based on clinician progress notes, patients were considered awake with or not awake without conscious behavior at the time of WLST. Qualitative analysis of progress notes focused on symptoms documented for patients.

Results

One-hundred-one patients with stroke died after WLST. Their median age was 73 years, 48 were women, and 34 were awake at the time of WLST, including three who participated in decision making. Median duration from WLST to death was 1 day (25th–75th percentile 0–2 days). Symptom documentation was rare and more likely to be found in patients who were awake (21/34, 62%) compared to those who were not awake (22/61, 36%). Dyspnea, pain, and restlessness were the main documented physical symptoms. Social, spiritual, and emotional needs of patients or families were less often documented.

Conclusion

Symptom assessment at end-of-life after stroke was limited. Prospective, systematic symptom assessment is needed to understand signs and symptoms during the end-of-life process in stroke, particularly among awake patients, so as to learn how best to address and manage symptoms in these patients.

背景：在美国，中风每年导致16万患者死亡，其中大多数死亡发生在医院决定停止或撤销维持生命治疗（WLST）后。对于中风患者（其中一些人还醒着）和他们的家人在生命结束时的经历，人们知之甚少。方法：在这项单中心、混合方法的回顾性质量改善研究中，我们纳入了所有在2022年WLST后死亡的急性卒中住院患者。收集基本特征进行描述性分析。根据临床医生的进展记录，患者在WLST时被认为是清醒的或没有有意识行为的清醒。对病程记录进行定性分析，重点关注患者记录的症状。结果：101例脑卒中患者术后死亡。年龄中位数为73岁，女性48例，WLST时清醒34例，其中参与决策3例。从WLST到死亡的中位持续时间为1天（第25 -75百分位0-2天）。症状记录很少，与未醒的患者（22/61,36%）相比，醒着的患者（21/34,62%）更容易出现症状记录。呼吸困难、疼痛和躁动是记录的主要躯体症状。患者或家属的社会、精神和情感需求很少被记录在案。结论：卒中后生命结束时的症状评估是有限的。需要进行前瞻性、系统性的症状评估，以了解卒中生命末期过程中的体征和症状，特别是清醒患者，从而了解如何最好地处理和管理这些患者的症状。

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