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Values Considerations in Telemedicine: Pause Before Shifting. 远程医疗的价值考量:在转移之前暂停。
IF 3.5 2区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2025-11-04 DOI: 10.1016/j.jpainsymman.2025.10.032
Meaghann S Weaver, Kenneth A Berkowitz

As a contingency standard of care, telemedicine use surged during the COVID-19 pandemic. The Medicare telehealth flexibilities introduced during the COVID-19 pandemic expired in September 2025. Any ongoing sustained pivot to telemedicine warrants purposeful attentiveness to ethical considerations and not just technology use as an end unto itself. Telemedicine has the potential to complement face-to-face care practices and enhance clinical interactions when its use is based on shared values. Values such as access, equity, justice, compassion, autonomy, and dignity warrant thoughtful use of telemedicine. Patients and families need to be able to trust that clinicians and health systems will place patient welfare and shared values above technical convenience. As demonstrated in this case description, upholding values fundamental to the practice of medicine in telemedicine can enhance patient connection and foster trustworthy postpandemic practices.

作为一种应急护理标准,远程医疗的使用在2019冠状病毒病大流行期间激增。2019冠状病毒病大流行期间引入的医疗保险远程医疗灵活性于2025年9月到期。任何正在进行的持续转向远程医疗都需要有目的地关注伦理考虑,而不仅仅是将技术使用本身作为目的。当远程医疗的使用基于共同的价值观时,它具有补充面对面护理实践和加强临床互动的潜力。获取、公平、正义、同情、自主和尊严等价值观要求我们深思熟虑地使用远程医疗。患者和家属需要能够相信临床医生和卫生系统将患者福利和共同价值观置于技术便利之上。正如本案例描述所示,在远程医疗中坚持医学实践的基本价值观可以加强与患者的联系,并促进可信赖的大流行后实践。
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引用次数: 0
"I Had a Needle, But This Program Gave Me the Thread": A Caregiver Screening and Response Protocol. “我有一根针,但这个项目给了我线”:护理人员筛选和反应协议。
IF 3.5 2区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2025-11-04 DOI: 10.1016/j.jpainsymman.2025.10.026
Rinat Nissim, Shenhab Zaig, Paige Chu, Nazanin Nouriany, Anna T Santiago, Jennifer Croke, Breffni Hannon

Context: Family caregivers of individuals with advanced cancer face significant psychological and practical burdens, yet support for them remains limited.

Objectives: This study aimed to develop and pilot a nurse-led screening and response protocol to address unmet support needs of family caregivers in an outpatient palliative care clinic (OPCC).

Methods: English-speaking adult family caregivers of patients attending an (OPCC) in a tertiary cancer center in Canada were recruited. Participants completed repeated needs screenings and engaged in follow-up nurse consultations, offering a tailored response. A satisfaction with care scale was administered at baseline and six months, and qualitative interviews explored participants' experiences.

Results: Of 31 family caregivers enrolled, all completed needs screening and a follow-up consultation at least once, and 61% completed both baseline and six-month measures. A pre-post analysis demonstrated a statistically significant improvement in satisfaction with psychosocial care. In qualitative interviews with a subset of 11 participants, family caregivers highlighted the value of receiving support independently from the patient, the acknowledgment of their needs as caregivers, having guidance to resolve concerns, and the facilitation of end-of-life planning.

Conclusion: Routine screening and response protocols for family caregivers may help facilitate timely and tailored support. Early implementation may enhance recruitment and engagement.

背景:晚期癌症患者的家庭照顾者面临着重大的心理和实际负担,但对他们的支持仍然有限。目的:本研究旨在制定和试点护士主导的筛查和响应方案,以解决门诊姑息治疗诊所家庭护理人员未满足的支持需求。方法:招募在加拿大三级癌症中心姑息治疗门诊就诊的患者的英语成人家庭护理人员。参与者完成了重复的需求筛选,并进行了后续护士咨询,提供了量身定制的响应。在基线和六个月时进行护理满意度量表,并进行定性访谈探讨参与者的经历。结果:在31名家庭照顾者中,所有人都完成了需求筛查和至少一次随访咨询,61%的人完成了基线和六个月的测量。一项前后分析显示,对心理社会护理的满意度在统计学上有显著改善。在对11名参与者的定性访谈中,家庭护理人员强调了从患者那里获得独立支持的价值,承认他们作为护理人员的需求,有指导来解决问题,并促进临终计划。结论:家庭照护者的常规筛查和响应方案有助于提供及时和有针对性的支持。尽早实施可能会加强招聘和参与。
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引用次数: 0
Opioid Conversion in Adults With Cancer: MASCC-ASCO-AAHPM-HPNA-NICSO Guideline Clinical Insights. 成人癌症患者阿片类药物转化:MASCC-ASCO-AAHPM-HPNA-NICSO指南临床见解
IF 3.5 2区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2025-11-04 DOI: 10.1016/j.jpainsymman.2025.10.027
Mellar P Davis, Kari Bohlke, Andrew Davies

Opioid conversion, also known as opioid rotation or switching, is a critical strategy in cancer pain management, necessitated in up to 40% of patients undergoing opioid therapy. In 2025, five leading international organizations-MASCC, ASCO, AAHPM, HPNA, and NICSO-collaborated to produce the first global consensus guideline on opioid conversion in adults with cancer. This review provides clinical insights into the guideline's recommendations, emphasizing individualized care, safety, and evidence-informed practice. Key components include comprehensive preconversion assessment, consensus-based conversion ratios, and vigilant postconversion monitoring. The guideline challenges traditional dose-reduction protocols and addresses controversial areas such as methadone use, transdermal fentanyl conversion, and bidirectional asymmetry. Broader considerations include socioeconomic disparities, stigma, pharmacogenetics, and geriatric-specific concerns. While the guideline offers a robust framework for safer opioid transitions, limitations include reliance on heterogeneous data and the need for clinician expertise. Future directions call for expanded access, education, and integration of personalized medicine approaches to optimize cancer pain management.

阿片类药物转换,也称为阿片类药物旋转或转换,是癌症疼痛管理的关键策略,高达40%的接受阿片类药物治疗的患者需要使用阿片类药物。2025年,mascc、ASCO、AAHPM、HPNA和nicso这五个领先的国际组织合作制定了第一个关于成人癌症阿片类药物转化的全球共识指南。这篇综述提供了对指南建议的临床见解,强调个体化护理、安全性和循证实践。关键组成部分包括全面的转换前评估、基于共识的转换比率和警惕的转换后监测。该指南挑战了传统的剂量减少方案,并解决了美沙酮使用、经皮芬太尼转化和双向不对称等有争议的领域。更广泛的考虑包括社会经济差异、病耻感、药物遗传学和老年特异性问题。虽然该指南为更安全的阿片类药物转换提供了强有力的框架,但其局限性包括依赖于异构数据和对临床医生专业知识的需求。未来的方向需要扩大访问,教育和个性化医疗方法的整合,以优化癌症疼痛管理。
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引用次数: 0
Burden Beyond the Bedside: A Global Synthesis of Depression in Informal Cancer Caregivers: An Umbrella Review. 床边以外的负担:非正式癌症护理人员抑郁的全球综合:一个总括性回顾。
IF 3.5 2区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2025-11-04 DOI: 10.1016/j.jpainsymman.2025.10.033
Tesfaye Engdaw Habtie, Molalign Aligaz Adisu, Sefineh Fenta Feleke, Tegene Atamenta Kitaw

Objective: The aim of this umbrella review is to synthesize pooled prevalence of existing evidence on depressive morbidity among informal cancer caregivers.

Method: This umbrella review was conducted in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, and the protocol was registered in PROSPERO (CRD420251032522). A comprehensive search of major databases was performed to identify relevant studies. Predefined inclusion and exclusion criteria were applied. The corrected covered area (CCA) was calculated to assess overlap, and the methodological quality of included reviews was evaluated using the AMSTAR 2 tool.

Results: This umbrella review included four systematic reviews and meta-analyses, comprising a total of 160 primary studies with 40,605 participants worldwide. The pooled global prevalence of depression among informal caregivers of cancer patients was 38% (95% confidence intervals, 95% CI: 28%-48%). However, prevalence estimates varied widely, ranging from 4 to 55%, likely due to differences in the depression assessment tools used across studies.

Conclusion and recommendation: In conclusion, this review reveals a high prevalence of depression among informal caregivers of cancer patients a burden comparable to or exceeding that observed in other chronic illnesses and global crises such as the COVID-19 pandemic. Integrating routine mental health screening using validated tools such as the CES-D or PHQ-9 into oncology care is essential. Structured interventions including counseling, psych-education, and respite care should be embedded within care pathways. Future research should prioritize standardized assessment tools and caregiver-focused strategies to enhance comparability and guide best practices. Policymakers must invest in caregiver mental health to ensure sustainable and compassionate cancer care systems.

目的:本综述的目的是综合现有的关于非正式癌症照顾者中抑郁症发病率的证据。方法:本综述按照PRISMA指南进行,方案在PROSPERO注册(CRD420251032522)。对主要数据库进行全面检索以确定相关研究。采用预定义的纳入和排除标准。计算校正的覆盖面积(CCA)以评估重叠,并使用AMSTAR 2工具评估纳入综述的方法学质量。结果:该总括性综述包括4项系统综述和荟萃分析,包括160项主要研究,全球40,605名参与者。癌症患者非正式照护者中抑郁症的全球总患病率为38% (95% CI: 28%-48%)。然而,患病率估计差异很大,从4%到55%不等,可能是由于研究中使用的抑郁症评估工具的差异。结论和建议:总而言之,本综述揭示了癌症患者非正式护理人员中抑郁症的高患病率,其负担与其他慢性疾病和COVID-19大流行等全球危机相当或超过。将常规的心理健康筛查纳入肿瘤治疗中,使用经过验证的工具,如CES-D或PHQ-9是必不可少的。包括咨询、心理教育和临时护理在内的结构化干预措施应嵌入护理途径中。未来的研究应优先考虑标准化评估工具和以护理者为中心的策略,以增强可比性并指导最佳实践。政策制定者必须投资于照顾者的心理健康,以确保可持续和富有同情心的癌症护理系统。
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引用次数: 0
Creating an E-Learning Resource to Improve Clinical Induction Within Hospices. 创建电子学习资源以改善安宁疗护院内的临床诱导。
IF 3.5 2区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2025-10-31 DOI: 10.1016/j.jpainsymman.2025.10.017
Maria Cassidy, Sarah Longwell, Salma Khanche

Objectives: Clinical induction for resident doctors rotating into new posts is vital for patient safety. Hospices provide repeated induction sessions to individual rotating doctors with limited resources. We proposed that a shared online learning resource could improve efficiency.

Methods: We created a re-usable online learning resource on Moodle© and piloted at Marie Curie Hospice, Bradford. standardizing the teaching, offering knowledge check quizzes and record of learning. We surveyed UK Marie Curie Hospices on their induction practices and with our digital education team developed a higher quality resource, hosted on the Marie Curie Virtual Learning Environment (VLE).

Results: Six of nine hospices surveyed responded; the majority reported clinical induction is resource intensive and were interested in an online resource. 22 resident doctors completed the pilot resource. 50% completed a feedback survey; 100% respondents rated the resource good or excellent and 100% agreed it met their learning needs. 102 users have now accessed the resource; knowledge check quiz scores are 74%-86%, with at least 20% improvement in confidence scores post resource completion.

Conclusion: We have successfully developed a re-usable online learning resource for more efficient clinical induction within Marie Curie hospices. We propose that this could be adopted by other hospices.

目的:住院医师轮岗的临床诱导对患者安全至关重要。临终关怀院为资源有限的个别轮岗医生提供反复的入门课程。我们提出共享在线学习资源可以提高效率。方法:我们在Moodle©上创建了一个可重复使用的在线学习资源,并在布拉德福德玛丽居里临终关怀医院进行了试点。规范教学,提供知识测验和学习记录。我们调查了英国居里夫人临终关怀医院的入社实践,并与我们的数字教育团队一起开发了一个更高质量的资源,托管在居里夫人虚拟学习环境(VLE)上。结果:受访的9家临终关怀医院中有6家有回应;大多数报告的临床诱导是资源密集型的,他们对在线资源感兴趣。22名住院医生完成了试点资源。50%的人完成了反馈调查;100%的受访者认为该资源良好或优秀,100%的受访者认为该资源满足了他们的学习需求。目前已有102个用户访问了该资源;知识检查测验得分为74-86%,资源完成后信心得分至少提高20%。结论:我们已经成功开发了一个可重复使用的在线学习资源,以提高居里夫人临终关怀医院的临床诱导效率。我们建议其他临终关怀医院也可以采用这一做法。
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引用次数: 0
Meaning and Psychedelics in Palliative Care: A Narrative Review. 姑息治疗的意义与致幻剂:叙述性回顾。
IF 3.5 2区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2025-10-30 DOI: 10.1016/j.jpainsymman.2025.10.015
William B Alexander, Eric D Hansen, Brian T Anderson, Ali John Zarrabi, Andrew H Rogers, Gregory Loewen, Zachary R Ficarro, Margaret H Alexander, Dylan Schaefer, Amy A Case

Context: Meaning is a primary existential concern in those with advanced illnesses and functions as an important coping mechanism. Loss of meaning contributes to existential distress, and, in particular, may manifest as demoralization, a syndrome of poor coping that is associated with negative outcomes. Psychedelics are unique psychoactive compounds that, among other properties, are proposed to enhance meaning. In the palliative setting, psychedelic therapies are under investigation for existential distress, including demoralization.

Objective: To synthesize the literature on meaning in palliative care, including the clinical impact of loss of meaning, particularly demoralization, and evidence for proposed interventions including existential psychological interventions and psychedelic therapies.

Methods: We conducted a narrative review based on a structured search within Pubmed. Articles were screened for those addressing prespecified questions derived from our objectives, and results were synthesized in narrative format.

Results: Loss of meaning is a hallmark feature of demoralization syndrome, a prevalent and distinct condition linked with diminished quality of life, increased symptom burden, and increased suicide risk. Existential psychological interventions improve numerous psychosocial outcomes, although evidence for their efficacy in demoralization is limited. In psychedelic therapy, meaning-making is a typical feature, and existential interventions are commonly integrated. Finally, early clinical trial data indicate that psychedelic therapies show promise for existential distress, including demoralization.

Conclusions: Novel approaches are needed to address existential distress, especially when manifested as demoralization. Psychedelic therapy is a promising combined pharmacologic and psychological intervention that promotes meaning-making and shows potential for improving demoralization, warranting further investigation.

语境:意义是晚期疾病患者首要的生存问题,是一种重要的应对机制。意义的丧失会导致存在的痛苦,特别是可能表现为士气低落,这是一种与负面结果相关的应对能力差的综合征。致幻剂是一种独特的精神活性化合物,除其他特性外,被认为可以增强意义。在姑息疗法中,人们正在研究迷幻疗法治疗存在主义痛苦,包括士气低落。目的:综合姑息治疗中意义的文献,包括意义丧失的临床影响,特别是士气低落,以及存在主义心理干预和迷幻疗法等干预措施的证据。方法:我们在Pubmed中进行了基于结构化搜索的叙述性综述。从我们的目标中筛选那些解决预先指定问题的文章,并以叙述形式综合结果。结果:意义丧失是士气低落综合征的一个标志性特征,是一种普遍而独特的疾病,与生活质量下降、症状负担增加和自杀风险增加有关。存在主义心理干预改善了许多社会心理结果,尽管证据表明其在士气低落方面的有效性有限。在迷幻治疗中,意义制造是一个典型的特征,存在主义干预通常是综合的。最后,早期的临床试验数据表明,迷幻疗法有望治疗存在的痛苦,包括士气低落。结论:需要新的方法来解决存在的痛苦,特别是当表现为士气低落时。致幻剂治疗是一种很有前途的药物和心理联合干预,可以促进意义的产生,并显示出改善士气低落的潜力,值得进一步研究。
{"title":"Meaning and Psychedelics in Palliative Care: A Narrative Review.","authors":"William B Alexander, Eric D Hansen, Brian T Anderson, Ali John Zarrabi, Andrew H Rogers, Gregory Loewen, Zachary R Ficarro, Margaret H Alexander, Dylan Schaefer, Amy A Case","doi":"10.1016/j.jpainsymman.2025.10.015","DOIUrl":"10.1016/j.jpainsymman.2025.10.015","url":null,"abstract":"<p><strong>Context: </strong>Meaning is a primary existential concern in those with advanced illnesses and functions as an important coping mechanism. Loss of meaning contributes to existential distress, and, in particular, may manifest as demoralization, a syndrome of poor coping that is associated with negative outcomes. Psychedelics are unique psychoactive compounds that, among other properties, are proposed to enhance meaning. In the palliative setting, psychedelic therapies are under investigation for existential distress, including demoralization.</p><p><strong>Objective: </strong>To synthesize the literature on meaning in palliative care, including the clinical impact of loss of meaning, particularly demoralization, and evidence for proposed interventions including existential psychological interventions and psychedelic therapies.</p><p><strong>Methods: </strong>We conducted a narrative review based on a structured search within Pubmed. Articles were screened for those addressing prespecified questions derived from our objectives, and results were synthesized in narrative format.</p><p><strong>Results: </strong>Loss of meaning is a hallmark feature of demoralization syndrome, a prevalent and distinct condition linked with diminished quality of life, increased symptom burden, and increased suicide risk. Existential psychological interventions improve numerous psychosocial outcomes, although evidence for their efficacy in demoralization is limited. In psychedelic therapy, meaning-making is a typical feature, and existential interventions are commonly integrated. Finally, early clinical trial data indicate that psychedelic therapies show promise for existential distress, including demoralization.</p><p><strong>Conclusions: </strong>Novel approaches are needed to address existential distress, especially when manifested as demoralization. Psychedelic therapy is a promising combined pharmacologic and psychological intervention that promotes meaning-making and shows potential for improving demoralization, warranting further investigation.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-10-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145421675","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
Beyond the Pandemic: End-of-Life Care Lessons From Latin America to Inform Future Health Emergencies. 超越大流行:拉丁美洲临终关怀经验为未来突发卫生事件提供参考。
IF 3.5 2区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2025-10-30 DOI: 10.1016/j.jpainsymman.2025.10.016
Vilma A Tripodoro, Pedro Pérez-Cruz, Marina Khoury, Martha Ximena León, José Mario López Saca, Verónica Veloso, Ángela Acero, Sebastián Soto-Guerrero, Marco Rodríguez, Michelle Uchida, Ida Korfage, Agnes van der Heide

Context: The COVID-19 pandemic exposed critical weaknesses in end-of-life care (EOLC), particularly in Latin America, where fragmented health systems and inequities intensified suffering.

Objectives: To examine bereaved relatives' perceptions of EOLC during the pandemic in five Latin American countries, identify predictors of perceived adequacy, and assess alignment with the Core Outcome Set (COS) for best care for the dying person, a consensus-based set of patient-centered outcomes for end-of-life care.

Methods: A cross-sectional online survey of bereaved relatives was conducted in Argentina, Brazil, Chile, Colombia, and El Salvador (2021-2023) using an adapted iCODE questionnaire (Care of the Dying Evaluation). The primary outcome, perceived "adequate care" in the last 48 hours of life, was based on two iCODE items. Logistic regression identified associated factors.

Results: Among 1,125 respondents, 51% perceived care as adequate, varying from 45% in Argentina and Colombia to 81% in El Salvador (P < 0.001). Independent predictors included personal care support (P < 0.001), emotional support (P < 0.001), trust in professionals (P < 0.001), symptom relief (P ≤ 0.001), effective communication (P = 0.012), and family involvement in decision-making (P = 0.045). COVID-19 restrictions were negatively associated with perceived adequacy. Alignment of our findings with the COS domains revealed persistent gaps in spiritual support, shared decision-making, and communication.

Conclusion: Perceptions of EOLC adequacy during the pandemic varied across Latin America. Relational, emotional, and physical aspects of care strongly influenced relatives' assessments. The COS offers a practical framework to identify and address care gaps. Its adoption could promote holistic, culturally sensitive EOLC, essential to improving care in the region.

背景:2019冠状病毒病大流行暴露了临终关怀方面的严重弱点,特别是在拉丁美洲,那里支离破碎的卫生系统和不平等加剧了痛苦。目的:研究五个拉丁美洲国家大流行期间丧失亲人亲属对EOLC的看法,确定感知充足性的预测因素,并评估与临终者最佳护理核心结果集(COS)的一致性,这是一套基于共识的以患者为中心的临终关怀结果集。方法:在阿根廷、巴西、智利、哥伦比亚和萨尔瓦多(2021-2023年)对丧亲亲属进行横断面在线调查,采用iCODE(临终关怀评估)问卷。主要结局是在生命最后48小时内感知到的“适当护理”,以两个iCODE项目为基础。逻辑回归确定了相关因素。结果:在1125名受访者中,51%认为护理足够,从阿根廷和哥伦比亚的45%到萨尔瓦多的81%不等(p < 0.001)。独立预测因子包括个人护理支持(p < 0.001)、情感支持(p < 0.001)、对专业人员的信任(p < 0.001)、症状缓解(p≤0.001)、有效沟通(p = 0.012)和家庭参与决策(p = 0.045)。COVID-19限制与感知充分性呈负相关。我们的研究结果与COS领域相一致,揭示了精神支持、共同决策和沟通方面的持续差距。结论:大流行期间,拉丁美洲各国对EOLC充分性的看法各不相同。护理的关系、情感和身体方面强烈影响亲属的评估。COS提供了一个确定和解决护理差距的实用框架。它的采用可以促进整体的、具有文化敏感性的EOLC,这对于改善该地区的护理至关重要。
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引用次数: 0
My Heart Will Go On: Caregiver Experiences of a Legacy Intervention in Acute Palliative Care. 我的心将继续:在急性姑息治疗的遗留干预护理经验。
IF 3.5 2区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2025-10-28 DOI: 10.1016/j.jpainsymman.2025.10.019
Korijna Valenti, Mary Cleveland, Kim Hamrick, Jasmine Vickers, Macy L Stockdill, Jennifer Hicks, Rodney O Tucker, Chao-Hui Sylvia Huang

Background: The Heartbeat Project (HBP) is a music therapist-led legacy intervention that incorporates patients' heartbeat recordings into personalized audio keepsakes. While anecdotally described as meaningful, few studies have explored caregiver outcomes after participation.

Objective: To describe implementation characteristics and caregiver-reported outcomes of the HBP to understand caregiver perceptions and inform best practices in palliative care.

Design: This mixed-methods study documented song genre preferences at implementation. A 16-item survey assessed caregiver engagement, satisfaction, and perceived emotional impact. Descriptive statistics and thematic analysis were applied to survey responses and qualitative feedback.

Setting/subjects: Patients receiving palliative care (n = 81) and caregivers (n = 29) were recruited from the University of Alabama at Birmingham's Palliative and Comfort Care Unit.

Results: Of 81 bereaved caregivers, 30 responded (36.7%), including both adult and pediatric caregivers. Most reported being very satisfied and described the keepsake as comforting, meaningful, and helpful during grief. Ratings for "comfort," "helpfulness," and "meaningfulness" were consistently high (mean scores: 9.14-9.96/10). Qualitative themes included emotional resonance, legacy preservation, and appreciation for personalized care.

Conclusion: The HBP was highly acceptable to caregivers and perceived as emotionally supportive. Findings suggest that legacy-based music therapy interventions may enhance grief coping across diverse palliative care settings.

背景:心跳项目(HBP)是一项由音乐治疗师主导的遗产干预,将患者的心跳录音纳入个性化的音频纪念品中。虽然有传闻称这很有意义,但很少有研究探讨参与后的护理结果。目的:描述HBP的实施特点和护理人员报告的结果,以了解护理人员的看法,并为姑息治疗的最佳实践提供信息。设计:这个混合方法的研究记录了歌曲类型的偏好。一项包含16个项目的调查评估了照顾者的参与度、满意度和感知到的情感影响。描述性统计和专题分析应用于调查答复和定性反馈。环境/受试者:接受姑息治疗的患者(n = 81)和护理人员(n = 29)从阿拉巴马大学伯明翰分校的姑息和舒适护理部门招募。结果:81名丧亲者中,30名(36.7%)回应,包括成人和儿童护理人员。大多数人表示非常满意,并将纪念品描述为安慰,有意义,在悲伤期间有帮助。“舒适”、“有用”和“有意义”的评分一直很高(平均得分:9.14-9.96/10)。定性主题包括情感共鸣、遗产保护和对个性化护理的欣赏。结论:照护者对HBP有较高的接受度,并将其视为情感支持。研究结果表明,以遗产为基础的音乐疗法干预可能会提高不同姑息治疗环境下的悲伤应对能力。
{"title":"My Heart Will Go On: Caregiver Experiences of a Legacy Intervention in Acute Palliative Care.","authors":"Korijna Valenti, Mary Cleveland, Kim Hamrick, Jasmine Vickers, Macy L Stockdill, Jennifer Hicks, Rodney O Tucker, Chao-Hui Sylvia Huang","doi":"10.1016/j.jpainsymman.2025.10.019","DOIUrl":"10.1016/j.jpainsymman.2025.10.019","url":null,"abstract":"<p><strong>Background: </strong>The Heartbeat Project (HBP) is a music therapist-led legacy intervention that incorporates patients' heartbeat recordings into personalized audio keepsakes. While anecdotally described as meaningful, few studies have explored caregiver outcomes after participation.</p><p><strong>Objective: </strong>To describe implementation characteristics and caregiver-reported outcomes of the HBP to understand caregiver perceptions and inform best practices in palliative care.</p><p><strong>Design: </strong>This mixed-methods study documented song genre preferences at implementation. A 16-item survey assessed caregiver engagement, satisfaction, and perceived emotional impact. Descriptive statistics and thematic analysis were applied to survey responses and qualitative feedback.</p><p><strong>Setting/subjects: </strong>Patients receiving palliative care (n = 81) and caregivers (n = 29) were recruited from the University of Alabama at Birmingham's Palliative and Comfort Care Unit.</p><p><strong>Results: </strong>Of 81 bereaved caregivers, 30 responded (36.7%), including both adult and pediatric caregivers. Most reported being very satisfied and described the keepsake as comforting, meaningful, and helpful during grief. Ratings for \"comfort,\" \"helpfulness,\" and \"meaningfulness\" were consistently high (mean scores: 9.14-9.96/10). Qualitative themes included emotional resonance, legacy preservation, and appreciation for personalized care.</p><p><strong>Conclusion: </strong>The HBP was highly acceptable to caregivers and perceived as emotionally supportive. Findings suggest that legacy-based music therapy interventions may enhance grief coping across diverse palliative care settings.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-10-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145409398","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
Patient and Care-Partner Voices in ALS: Shaping Behavioral Health and Collaborative Care. 渐冻症患者和护理伙伴的声音:塑造行为健康和协作护理。
IF 3.5 2区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2025-10-28 DOI: 10.1016/j.jpainsymman.2025.10.020
Christina L Rush, Ethan G Lester, Kush Mehta, Morgan Seward, Ana-Maria Vranceanu

Context: Amyotrophic lateral sclerosis (ALS) is a progressive, fatal neurodegenerative disease. Nearly half of people with ALS (pALS) and their care partners experience significant emotional distress, particularly around the time of diagnosis, yet behavioral health needs are inconsistently addressed.

Objectives: To explore perspectives of pALS and care partners regarding emotional distress, behavioral health needs and preferences, and access to behavioral health resources within their clinics and communities.

Methods: 134 participants (88 pALS and 46 care partners) were recruited through ALS Y nonprofit listservs to complete an online survey developed by the study team. The survey included closed- and open-ended questions assessing behavioral health history, current needs, access to services, and preferred care approaches.

Results: Participants (59.7%, n = 80) self-reported lack of behavioral health screening, 47.7% (n = 42) of pALS reported new behavioral health diagnoses after ALS diagnosis. 46 (52.3%) of pALS and 32 (69.6%) of care partner proxies expressed a need for behavioral health care at time of ALS diagnosis and were open to a range of provider types. Open-ended responses noted limited time, need for ALS-tailored behavioral health care, and feeling overwhelmed postdiagnosis.

Conclusion: Findings highlight current gaps and opportunity to enhance behavioral health within interdisciplinary care. Embedding brief, flexible interventions delivered by a range of trained providers-particularly at key transitions-may support emotional well-being, care engagement, and quality of life for pALS and care partners.

背景:肌萎缩性侧索硬化症(ALS)是一种进行性、致命性的神经退行性疾病。近一半的ALS患者及其护理伙伴经历了严重的情绪困扰,特别是在诊断前后,但行为健康需求却得不到一致的解决。目的:探讨pal和护理伙伴在其诊所和社区内对情绪困扰、行为健康需求和偏好以及行为健康资源获取的看法。方法:134名参与者(88名pal和46名护理伙伴)通过ALS Y非营利列表服务招募,完成由研究小组开发的在线调查。该调查包括封闭式和开放式问题,评估行为健康史、当前需求、获得服务的途径和首选护理方法。结果:参与者(59.7%,n = 80)自我报告缺乏行为健康筛查,47.7% (n = 42)的pALS在ALS诊断后报告新的行为健康诊断。46个(52.3%)的pal和32个(69.6%)的护理伙伴代理在ALS诊断时表示需要行为卫生保健,并向一系列提供者类型开放。开放式回答指出时间有限,需要为als量身定制的行为保健,以及诊断后感到不知所措。结论:研究结果强调了目前在跨学科护理中加强行为健康的差距和机会。嵌入由一系列训练有素的提供者提供的简短、灵活的干预措施,特别是在关键的过渡阶段,可以支持pal和护理伙伴的情绪健康、护理参与和生活质量。
{"title":"Patient and Care-Partner Voices in ALS: Shaping Behavioral Health and Collaborative Care.","authors":"Christina L Rush, Ethan G Lester, Kush Mehta, Morgan Seward, Ana-Maria Vranceanu","doi":"10.1016/j.jpainsymman.2025.10.020","DOIUrl":"10.1016/j.jpainsymman.2025.10.020","url":null,"abstract":"<p><strong>Context: </strong>Amyotrophic lateral sclerosis (ALS) is a progressive, fatal neurodegenerative disease. Nearly half of people with ALS (pALS) and their care partners experience significant emotional distress, particularly around the time of diagnosis, yet behavioral health needs are inconsistently addressed.</p><p><strong>Objectives: </strong>To explore perspectives of pALS and care partners regarding emotional distress, behavioral health needs and preferences, and access to behavioral health resources within their clinics and communities.</p><p><strong>Methods: </strong>134 participants (88 pALS and 46 care partners) were recruited through ALS Y nonprofit listservs to complete an online survey developed by the study team. The survey included closed- and open-ended questions assessing behavioral health history, current needs, access to services, and preferred care approaches.</p><p><strong>Results: </strong>Participants (59.7%, n = 80) self-reported lack of behavioral health screening, 47.7% (n = 42) of pALS reported new behavioral health diagnoses after ALS diagnosis. 46 (52.3%) of pALS and 32 (69.6%) of care partner proxies expressed a need for behavioral health care at time of ALS diagnosis and were open to a range of provider types. Open-ended responses noted limited time, need for ALS-tailored behavioral health care, and feeling overwhelmed postdiagnosis.</p><p><strong>Conclusion: </strong>Findings highlight current gaps and opportunity to enhance behavioral health within interdisciplinary care. Embedding brief, flexible interventions delivered by a range of trained providers-particularly at key transitions-may support emotional well-being, care engagement, and quality of life for pALS and care partners.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-10-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145409354","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
Subcutaneous Dexmedetomidine for Refractory Symptoms in a Hospice Inpatient Unit. 右美托咪定皮下注射治疗临终关怀住院病房的难治性症状。
IF 3.5 2区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2025-10-28 DOI: 10.1016/j.jpainsymman.2025.10.014
Holly Tate, Lana Ferguson

Context: Pain, agitation, and other refractory symptoms occur commonly in palliative patients. Dexmedetomidine has anxiolytic, analgesic, and sedating effects; however, its use remains uncommon in palliative care. In New Zealand, the Hospice Waikato Inpatient Unit has increasingly used dexmedetomidine since 2019 when symptoms are refractory and deep sedation is not desirable due to patient and prognostic factors.

Objectives: To describe use of subcutaneous dexmedetomidine infusions in the Hospice Waikato Inpatient Unit, noting patient demographics, treatment characteristics, safety factors, and effectiveness.

Methods: A retrospective, observational review of clinical records, using descriptive statistics.

Results: Twenty-six infusions in 25 adult patients (≥18 years) were analyzed, of whom 24 (96%) had malignancy. Refractory pain (n=24, 92%) and agitated delirium (n = 13, 50%) were the commonest indications for dexmedetomidine. Median duration was 4 days (interquartile range 2.3-8.8 days). Infusion rates ranged between 0.2 and 1.4 mcg/kg/hr. Side effects occurred in 15 infusions (58%) but none required cessation. Potentiation of opioids, causing sedation, occurred once (4% of infusion events). Hemodynamic monitoring was seldom performed. Median change in Richmond Agitation-Sedation Score (RASS-PAL) over 24 hours was -2 (P = 0.0001) and clinicians perceived dexmedetomidine as effective within 24 hours in 23 cases (88%). Opioid and midazolam requirements often reduced but this effect was less pronounced beyond 24 hours.

Conclusion: Dexmedetomidine subcutaneous infusion appears to be well-tolerated, safe, and effective in managing pain and agitation, while maintaining patients' ability to interact with family. It may avoid the need for palliative sedation therapy (PST) in some cases.

背景:疼痛、躁动和其他难治性症状常见于姑息治疗患者。右美托咪定具有抗焦虑、镇痛和镇静作用;然而,它的使用在姑息治疗中仍然不常见。在新西兰,怀卡托临终关怀住院病房自2019年以来越来越多地使用右美托咪定,当时症状难治性,由于患者和预后因素,不需要深度镇静。目的:描述在怀卡托临终关怀住院部皮下注射右美托咪定的使用情况,注意患者的人口统计、治疗特点、安全因素和有效性。方法:采用描述性统计对临床记录进行回顾性观察性回顾。结果:对25例18岁以上成人患者26例输液进行分析,其中24例(96%)为恶性肿瘤。难治性疼痛(n=24, 92%)和躁动性谵妄(n=13, 50%)是右美托咪定最常见的适应症。中位持续时间为4天(四分位数范围为2.3-8.8天)。输注速率在0.2-1.4微克/千克/小时之间。15例(58%)出现了副作用,但没有一例需要停止。阿片类药物引起镇静的增强发生一次(4%的输注事件)。很少进行血流动力学监测。24小时内Richmond激动镇静评分(ras - pal)的中位数变化为-2 (p=0.0001), 23例(88%)临床医生认为右美托咪定在24小时内有效。阿片类药物和咪达唑仑的需求通常会减少,但这种影响在24小时后就不那么明显了。结论:右美托咪定皮下输注在控制疼痛和躁动方面具有良好的耐受性、安全性和有效性,同时保持患者与家人互动的能力。在某些情况下,它可以避免需要姑息性镇静治疗(PST)。
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Journal of pain and symptom management
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