Serious illness

严重疾病
  • 文章类型: Published Erratum
    [这更正了文章DOI:10.3389/fmed.2024.1351864。].
    [This corrects the article DOI: 10.3389/fmed.2024.1351864.].
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  • 文章类型: Journal Article
    背景和目的:在现实世界的临床环境中,在实际试验中,传统的保真度监测方法是不可能的。我们描述了通过在务实试验中使用标准化患者来监测和增强难以触及的亚群的ACP对话的保真度的方法。研究设计和方法:我们开发了以尊重选择第一步™高级护理计划课程为基础的标准化患者情景,以提供加强和评估ACP促进者能力的机会。场景代表一对一的相遇。第一例是标准化的认知障碍患者,第二例涉及标准化的痴呆症患者及其护理伙伴。使用先前验证的保真度检查表对模拟期间观察到的技能和行为进行评分,包括相遇设置,ACP主题,和一般的沟通。模拟涉及语音电话会议,以在实用试验中调整ACP的主要模式。结果:六名主持人完成了两个标准化的患者病例。认知障碍患者和痴呆患者和护理伴侣患者的总体保真度得分中等高(78.8%±11.7;63.4-95.6)(76.2%±13.0;54.4-91.5)。讨论和启示:使用标准化患者的模拟支持保真度监测并提供可指导的反馈以支持促进者的能力。我们的研究可以帮助为未来的研究和培训提供信息,这些研究和培训涉及患有阿尔茨海默病和相关疾病的老年人的提前护理计划。
    Background and Objectives: Traditional methods of fidelity monitoring are not possible in pragmatic trials in real-world clinical settings. We describe our approach to monitoring and reinforcing the fidelity to ACP conversations for a hard-to-reach subpopulation by using standardized patients in a pragmatic trial. Research Design and Methods: We developed standardized patient scenarios grounded in the Respecting Choices First Steps™ Advance Care Planning curriculum to provide an opportunity to reinforce and assess ACP facilitator competency. Scenarios represented one-on-one encounters. The first case was a standardized patient with cognitive impairment and the second case involved a standardized patient with dementia and their care partner. A previously validated fidelity checklist was used to score skills and behaviors observed during simulations including encounter set-up, ACP topics, and general communication. Simulations involved voice teleconferencing to align primary modality of ACP in the pragmatic trial. Results: Six facilitators completed two standardized patient cases each. Overall fidelity scores were moderately high (78.8% ± 11.7; 63.4 - 95.6) for the case with cognitive impairment and for the case with the patient with dementia and care partner (76.2% ± 13.0; 54.4 - 91.5). Discussion and Implications: Simulation using standardized patients supported fidelity monitoring and provided coachable feedback to support facilitator competency. Our study can help inform future research and training related to advance care planning in older adults living with Alzheimer\'s disease and related disorders.
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  • 文章类型: Journal Article
    背景:黑人患者之间的医学不信任已被用来解释在生命结束时存在有据可查的种族不平等现象,这对该群体产生了负面影响。然而,在严重疾病的背景下,很少有研究描述关于种族主义和歧视性经历对不信任的影响的患者观点。
    目的:为了更好地描述重病患者中种族主义和歧视的经历及其与医疗不信任的关系。
    方法:72名患有严重疾病的黑人参与者在一所学术县医院住院。
    方法:这是一项融合的混合方法研究,使用来自参与者完成的调查和现有的半结构化访谈的数据,激发参与者对医学种族主义经历的看法,通信,和决策。
    方法:医学种族主义的经验及其与基于群体的医学不信任(GBMM)量表评分的关联,一种经过验证的医疗不信任措施。
    结果:在72名黑人参与者中,35%参加了面试。参与者大多是有显著社会经济劣势的男性,包括低水平的财富,收入,和教育程度。据报道,在GBMM量表的总体得分中,基于种族的不信任程度很高(平均值[SD],36.6[9.9]),以及在怀疑范围内的高分(14.2[5.0]),医疗保健方面的群体差异(9.9[2.8]),和缺乏支持(9.1[2.7])分量表。三个定性主题与GBMM子量表一致。参与者对医护人员(HCWs)和现代医学表示怀疑,讲述了医疗环境中歧视的个人经历,并且对来自HCW的沟通不畅感到沮丧。
    结论:这项研究发现,患有严重疾病的黑人患者之间存在高度的不信任。对HCWs的怀疑,按种族划分的医疗保健差距,缺乏HCW的支持是影响医疗不信任的首要主题。Critical,需要有种族意识的方法来创建战略和框架,以提高医疗机构和工作人员的可信度。
    BACKGROUND: Medical mistrust among Black patients has been used to explain the existence of well-documented racial inequities at the end of life that negatively impact this group. However, there are few studies that describe patient perspectives around the impact of racism and discriminatory experiences on mistrust within the context of serious illness.
    OBJECTIVE: To better characterize experiences of racism and discrimination among patients with serious illness and its association with medical mistrust.
    METHODS: Seventy-two Black participants with serious illness hospitalized at an academic county hospital.
    METHODS: This is a convergent mixed methods study using data from participant-completed surveys and existing semi-structured interviews eliciting participants\' perspectives around their experiences with medical racism, communication, and decision-making.
    METHODS: The experience of medical racism and its association with Group-Based Medical Mistrust (GBMM) scale scores, a validated measure of medical mistrust.
    RESULTS: Of the 72 Black participants, 35% participated in interviews. Participants were mostly men who had significant socioeconomic disadvantage, including low levels of wealth, income, and educational attainment. There were reported high levels of race-based mistrust in the overall GBMM scale score (mean [SD], 36.6 [9.9]), as well as high scores within the suspicion (14.2 [5.0]), group disparities in healthcare (9.9 [2.8]), and lack of support (9.1 [2.7]) subscales. Three qualitative themes aligned with the GBMM subscales. Participants expressed skepticism of healthcare workers (HCWs) and modern medicine, recounted personal experiences of discrimination in the medical setting, and were frustrated with poor communication from HCWs.
    CONCLUSIONS: This study found high levels of mistrust among Black patients with serious illness. Suspicion of HCWs, disparities in healthcare by race, and a lack of support from HCWs were overarching themes that influenced medical mistrust. Critical, race-conscious approaches are needed to create strategies and frameworks to improve the trustworthiness of healthcare institutions and workers.
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  • 文章类型: Journal Article
    目的:了解多学科医疗保健临床医生,为癌症患者及其护理伙伴提供精神护理的有意义且具有挑战性的经验。
    方法:参加了由美国国家癌症研究所支持的沟通培训计划或护士姑息治疗培训的多学科临床医生(N=257)回答了两个,关于提供精神关怀的有意义和具有挑战性的经验的开放式问题。使用迭代对响应进行主题分析,进行感应方法直到达到饱和。
    结果:护理参与者(68%),社会工作(22%),牧师(10%)回答了开放式调查问题。与提供精神护理的有意义的经验相关的三个主题出现了:与患者和护理伙伴建立真实的人际关系;为患者和护理伙伴创造有意的空间,以告知精神护理;并以灵性积极支持患者和护理伙伴的过程。与提供精神护理的挑战性经历相关的三个主题出现了:环境因素和临床环境使精神护理的提供复杂化;面临提供高质量的障碍,以患者为中心的护理;以及影响精神和其他护理的伦理和后勤问题。
    结论:临床医生在为癌症患者提供精神护理的过程中,从一系列经验中获得意义。然而,他们在癌症环境中提供以人为本的精神护理方面也面临许多挑战,一些挑战反映了精神护理知识和培训方面的巨大差距。研究结果可以指导精神护理领域多学科临床医生的未来培训和教育工作。
    OBJECTIVE: To understand multidisciplinary healthcare clinicians\' meaningful and challenging experiences providing spiritual care to patients with cancer and their care partners.
    METHODS: Multidisciplinary clinicians who participated in a communication training program supported by the National Cancer Institute or a palliative care training for nurses (N = 257) responded to two, open-ended questions about meaningful and challenging experiences of providing spiritual care. A thematic analysis of responses using an iterative, inductive approach was conducted until saturation was reached.
    RESULTS: Participants from nursing (68%), social work (22%), and chaplaincy (10%) responded to open-ended survey questions. Three themes related to meaningful experiences of providing spiritual care emerged: building authentic interpersonal connection with patients and care partners; creating intentional space for patients and care partners to inform spiritual care; and actively supporting patients and care partners in their processes with spirituality. Three themes related to challenging experiences of providing spiritual care emerged: contextual factors and clinical circumstances complicate provision of spiritual care; facing barriers to providing high-quality, patient-centered care; and navigating ethical and logistical issues that affect spiritual and other care.
    CONCLUSIONS: Clinicians derive meaning from a range of experiences throughout their provision of spiritual care to patients with cancer. However, they also face many challenges in delivering person-centered spiritual care in cancer settings, with some challenges reflecting significant gaps in spiritual care knowledge and training. Findings can guide future training and educational endeavors for multidisciplinary clinicians in the domain of spiritual care.
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  • 文章类型: Journal Article
    患有物质使用障碍(SUD)的人由于其物质使用的并发症以及与传统医疗保健环境和机构接触的挑战而缩短了寿命。这种对预期寿命的影响在同时发生SUD和癌症的患者中尤为突出。与没有SUD的类似患者相比,癌症的预后通常要差得多。姑息治疗团队是严重疾病沟通和症状管理方面的专家,并且已越来越多地嵌入癌症患者的常规护理中。我们认为,姑息治疗团队的技能组合非常适合解决这个经常被边缘化的群体的需求。我们对满足这些需求的工具进行了全面审查,包括可以治疗疼痛和阿片类药物使用障碍(OUD)的药物,并强调以尊重和有效的方式治疗OUD和癌症患者的社会心理方法。使用创伤知情框架,我们专注于成瘾医学中减少伤害的原则和清晰沟通的原则的应用,伴奏,从姑息治疗到最大限度的支持。我们还专注于减少护理中的耻辱的方法,通过提供减少障碍和增加患者参与度的语言。最后,我们描述了一个诊所嵌入在我们机构的癌症中心,旨在为癌症和SUD患者服务,建立在减少伤害的框架上,伴奏和创伤知情护理(TIC)。总的来说,我们的目标是为解决癌症和OUD患者面临的共同挑战提供背景,包括心理社会压力对物质使用和癌症治疗的直接影响,疾病导向治疗的延误可能会影响进一步的治疗选择和结果,由于阿片类药物债务增加,对疼痛管理具有挑战性,以及在面对潜在的最终诊断时通过物质使用可能丧失主要应对机制。
    People with a substance use disorder (SUD) have shortened lifespans due to complications from their substance use and challenges engaging with traditional health care settings and institutions. This impact on life expectancy is especially prominent in patients with co-occurring SUDs and cancer, and often has a much worse prognosis from the cancer than a similar patient without a SUD. Palliative care teams are experts in serious illness communication and symptom management and have become increasingly embedded in the routine care of patients with cancer. We argue that the skill set of palliative care teams is uniquely suited for addressing the needs of this oft marginalized group. We provide a comprehensive review of tools for addressing these needs, including medications that can both treat pain and opioid use disorder (OUD), and highlight psychosocial approaches to treating patients with OUD and cancer in a way that is respectful and effective. Using a trauma informed framework, we focus on the application of harm reduction principles from addiction medicine and the principles of clear communication, accompaniment, and emotional presence from palliative care to maximize support. We also focus on ways to reduce stigma in the delivery of care, by providing language that reduces barriers and increases patient engagement. Finally, we describe a clinic embedded within our institution\'s cancer center which aims to serve patients with cancer and SUDs, built on the framework of harm reduction, accompaniment and trauma informed care (TIC). Overall, we aim to provide context for addressing the common challenges that arise with patients with cancer and OUD, including the direct impact of psychosocial stress on substance use and cancer treatment, delays in disease directed treatment that can potentially impact further treatment options and outcomes, challenging pain management due to greater opioid debt, and potential loss of primary coping mechanism through substance use in the face of potential terminal diagnosis.
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  • 文章类型: Journal Article
    背景:对于患有严重疾病的患者,姑息治疗服务的一个目的是减少以医院为基础的治疗发作的频率和严重程度。由于医院替代姑息治疗可能会消耗昂贵的资源,提供者需要有效地将高强度服务针对那些最有可能发生此类不良护理事件的人。目的:我们的目的是逐步调查基于严重疾病的限制性诊断指征,以前瞻性地识别平均住院率较高的患者。设计/设置:我们使用历史Medicare索赔记录设计了一项观察性队列质量改进研究,以评估针对姑息和严重疾病护理资源的诊断纳入标准。我们首先分离出严重不良人群(SIP),然后定义了更多SIP和大多数SIP子组。测量:我们的主要结果测量是2019年SIP患者住院的急性护理计数,更多SIP,和大多数SIP子组,分别。结果:更多SIP和大多数SIP亚组的住院率较高。然而,他们还排除了逐渐严重的患者,这些患者确实经历了住院治疗。此外,几乎一半的MostSIP亚组根本没有住院,尽管平均住院率大于1。结论:当近一半的目标人群从未去医院时,分配资源(人员和服务)以减少住院可能会导致不必要的支出,并排除可能受益的患者。参与基于社区的服务以检测状态的变化可以为何时以及为谁提供姑息治疗资源提供补充指示。
    Background: For patients with serious illnesses, one aim of palliative care services is to reduce the frequency and severity of hospital-based episodes of care. Since hospital-alternative palliative care may consume costly resources, providers need to efficiently target high-intensity services toward those most at risk for such adverse episodes of care. Objective: Our objective was to investigate progressively more restrictive diagnosis-based indications of serious illness as used to prospectively identify patients with higher average rates of hospitalization. Design/Setting: We designed an observational cohort quality improvement study using historical Medicare claims records to evaluate diagnostic inclusion criteria for targeting palliative and serious illness care resources. We first isolated a Seriously Ill Population (SIP) and then defined More SIP and Most SIP subgroups. Measurements: Our primary outcome measure was the 2019 acute-care count of hospitalizations for patients in the SIP, More SIP, and Most SIP subgroups, respectively. Results: The More SIP and Most SIP subgroups exhibited higher hospitalization rates. However, they also excluded progressively more seriously ill patients who did experience hospitalizations. In addition, almost half of the Most SIP subgroup were not hospitalized at all, despite having an average hospitalization rate greater than one. Conclusion:Allocating resources (personnel and services) toward reducing hospitalizations when almost half of the targeted population never goes to the hospital could result in unnecessary expenditures and exclude patients that could potentially benefit. Engaging community-based services to detect changes in status could provide supplemental indications of when and for whom to target palliative care resources.
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  • 文章类型: Journal Article
    姑息治疗有很多好处,包括改善症状管理,心理健康,和生活质量,财政储蓄,降低死亡率。然而,人们对姑息治疗知之甚少,经常被错误地视为临终关怀和临终关怀。对公众进行更好的姑息治疗及其益处教育的障碍包括缺乏专门从事姑息治疗的医疗保健提供者和多面手临床医生缺乏讨论这个主题的知识和信心,以及在繁忙的临床环境中时间限制。
    探索和比较知识,值,以及来自内布拉斯加州的19岁及以上的社区居住成年人关于严重疾病和临终医疗选择的做法。
    2022年收集的635名成年人的横截面数据的二次分析。我们研究了多年调查的第五波(2022年),重点是探索内布拉斯加州人对临终护理计划的理解和偏好。
    描述性统计和卡方检验,以比较各组之间的结果。单变量和多变量逻辑回归分析检查了变量与临终关怀和姑息治疗知识的关联。
    虽然50%的受访者听说过一些或很多关于姑息治疗的事情,64%的人不知道或不确定姑息治疗和临终关怀之间的区别。与那些报告健康状况不佳的人相比,那些报告健康状况不佳的人不太可能知道姑息治疗和临终关怀之间的区别,不错,或良好的健康。
    这项研究提供了深入了解社区成年人对姑息治疗的知识和态度,19岁及以上居住在内布拉斯加州。需要更多的努力来传达什么是姑息治疗,谁能从中得到帮助,以及为什么它不仅适用于生命终结的人们。提前护理计划讨论有助于提供清晰度。
    UNASSIGNED: Palliative care affords numerous benefits, including improvements in symptom management, mental health, and quality of life, financial savings, and decreased mortality. Yet palliative care is poorly understood and often erroneously viewed as end-of-life care and hospice. Barriers for better education of the public about palliative care and its benefits include shortage of healthcare providers specializing in palliative care and generalist clinicians\' lack of knowledge and confidence to discuss this topic and time constraints in busy clinical settings.
    UNASSIGNED: Explore and compare the knowledge, values, and practices of community-dwelling adults 19 years and older from Nebraska about serious illness and end-of-life healthcare options.
    UNASSIGNED: Secondary analysis of cross-sectional data collected in 2022 of 635 adults. We examined the fifth wave (2022) of a multiyear survey focusing on exploring Nebraskans\' understanding of and preferences related to end-of-life care planning.
    UNASSIGNED: Descriptive statistics and chi-square tests to compare results between groups. Univariable and multivariable logistic regression analyses examine associations of variables as to knowledge of hospice and palliative care.
    UNASSIGNED: While 50% of respondents had heard a little or a lot about palliative care, 64% either did not know or were not sure of the difference between palliative care and hospice. Those who reported being in poor health were not more likely to know the difference between palliative care and hospice compared to those reporting being in fair, good, or excellent health.
    UNASSIGNED: This study offers insight into the knowledge and attitudes about palliative care among community-dwelling adults, 19 years and older living in Nebraska. More effort is needed to communicate what palliative care is, who can receive help from it, and why it is not only for people at end of life. Advance care planning discussions can be useful in offering clarity.
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  • 文章类型: Journal Article
    系统层面的要求和人际障碍会干扰护士在出院时提供高质量信息,这可能导致护理人员缺乏管理患者护理的准备,并最终影响患者的健康。
    综合证据,证明在认知能力下降或阿尔茨海默病和相关痴呆的成年患者出院期间,护士与非正式护理人员进行有效沟通。
    住院护士与非正式护理人员沟通的范围审查。
    从三个数据库(MEDLINE,PsycINFO,和CINAHL),以及对灰色文献的单独搜索(N=18),提取和综合推荐的沟通实践,以改善护士护理经验,支持护理人员的激活和准备。
    策略的提取合成导致了两个主题,并具有相应的子主题:支持(信息交换,确定准备的空间和时间,和积极加强护理人员的努力)和结构(设定共同的期望,信息性资源,和标准化)。
    我们提供实用建议,以促进护士在出院时向严重疾病患者的护理人员提供高质量信息。
    UNASSIGNED: System level demands and interpersonal barriers can disrupt nurse delivery of high-quality information at discharge, which can contribute to a lack of caregiver preparedness to manage care of the patient and ultimately affect patient health.
    UNASSIGNED: To synthesize evidence on effective nurse communication with informal caregivers during hospital discharge of adult patients with cognitive decline or Alzheimer\'s disease and related dementia.
    UNASSIGNED: A scoping review of inpatient nurse communication with informal caregivers.
    UNASSIGNED: Collected research (published between 2011 and 2023) from three databases (MEDLINE, PsycINFO, and CINAHL), along with a separate search for gray literature (N = 18), to extract and synthesize recommended communication practices evidenced to improve the nurse care experience and support caregiver activation and preparedness.
    UNASSIGNED: Extraction synthesis of strategies resulted in two themes with corresponding sub-themes: Support (Information exchange, Space and time to determine preparedness, and Positive reinforcement of caregiver efforts) and Structure (Setting shared expectations, Informational resources, and Standardization).
    UNASSIGNED: We offer practical recommendations for both interpersonal and policy level facilitation of nurse delivery of high-quality information at discharge to caregivers of patients with serious illness.
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  • 文章类型: Journal Article
    背景:通常建议将一般实践作为启动预先护理计划(ACP)的理想设置,但这种情况下ACP的摄取量较低。ACP-GP是一种复杂的干预措施,以促进慢性患者的ACP,比利时全科医生的限制生命的疾病。旨在提高患者ACP参与度和全科医生(GP)ACP自我效能。在一项集群随机对照试验中,在增加这些结局方面,干预并不优于对照组.并行过程评估旨在增强对干预措施实施方式的理解,以及哪些因素可能影响了试验结果。
    方法:我们进行了混合方法过程评估,有效性,收养,实施,维护(RE-AIM)框架。数据来源包括征聘和执行监测,针对患者和全科医生的问卷,以及对患者和全科医生的半结构化(焦点小组)访谈。问卷数据进行描述性分析。首先对定性数据进行归纳分析;然后将主题演绎地分配给RE-AIM维度。
    结果:招募了35名全科医生和95名患者参加试验;全科医生的覆盖率很低。16名全科医生和46名患者在基线后3个月提供了问卷数据;转录了14名全科医生和11名患者的定性数据。采用干预成分是中度到良好的,GP的文档模板除外。访谈显示患者对ACP的态度各不相同,但是患者仍然强调,谈话使他们感到放心。全科医生特别重视ACP的积极框架。通过时,干预措施实施良好,参与者满意度高.然而,维护意向适中,全科医生提出了如何在未来可持续地实施ACP对话的问题。
    结论:在一般实践中实施复杂的ACP-GP干预是可行的,并且可以成功。然而,实施过程具有挑战性,可持续性次优。我们的研究结果将指导未来的研究和建议,以促进和实施ACP在一般实践中。
    背景:ISRCTN12995230;预期于2020年6月19日注册。
    BACKGROUND: General practice is often recommended as an ideal setting to initiate advance care planning (ACP), but uptake of ACP in this setting is low. ACP-GP is a complex intervention to facilitate ACP for patients with chronic, life-limiting illness in Belgian general practice. It aims to increase patient ACP engagement and general practitioner (GP) ACP self-efficacy. In a cluster-randomized controlled trial, the intervention was not superior to control in increasing these outcomes. A parallel process evaluation aimed to enhance understanding of how the intervention was implemented, and which factors might have influenced trial results.
    METHODS: We conducted a mixed-methods process evaluation following the Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) framework. Data sources include recruitment and implementation monitoring, questionnaires for patients and GPs, and semi-structured (focus group) interviews with patients and GPs. Questionnaire data were analyzed descriptively. Qualitative data were first analyzed inductively; themes were then assigned deductively to RE-AIM dimensions.
    RESULTS: Thirty-five GPs and 95 patients were recruited to the trial; GP reach was low. Sixteen GPs and 46 patients provided questionnaire data at 3 months post-baseline; qualitative data were transcribed for 14 GPs and 11 patients. Adoption of intervention components was moderate to good, with the exception of the documentation template for GPs. Interviews revealed varying patient attitudes towards ACP, but patients nonetheless emphasized that conversations made them feel reassured. GPs especially valued a positive framing of ACP. When adopted, the intervention was well-implemented and participant satisfaction was high. However, intention for maintenance was moderate, with GPs raising questions of how to sustainably implement ACP conversations in the future.
    CONCLUSIONS: Implementing the complex ACP-GP intervention in general practice is feasible, and can be successful. However, the implementation process is challenging and the sustainability is suboptimal. Our findings will guide future research and recommendations for facilitating and implementing ACP in general practice.
    BACKGROUND: ISRCTN12995230; prospectively registered on 19/06/2020.
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  • 文章类型: Journal Article
    目的:本研究的目的是检查生命最后一年的门户使用与生命结束(EOL)结局之间的关系。方法:在KaiserPermanenteColorado进行的一项回顾性队列研究(n=6,517),研究对象为2016年1月1日至2019年6月30日之间死亡的严重疾病成年人。门户使用被分类为参与类型:无使用,非活性,在没有提供者的情况下活跃,并与提供者一起活跃。EOL结果是死亡前一个月住院,去年提前指令完成,和临终关怀使用。使用χ2统计和广义线性模型评估EOL结果与门户使用水平之间的关联。结果:较高的门静脉参与类型与较高的住院率相关(p=0.0492),提前指令完成(p=0.0226),和临终关怀使用(p=0.0070)。结论:生命最后一年的门户使用与不良EOL结局的增加有关,住院治疗,和有益的EOL结果,预先指令,和临终关怀。
    Objective: The objective of this study was to examine the association between portal use and end-of-life (EOL) outcomes in the last year of life. Methods: A retrospective cohort (n = 6,517) study at Kaiser Permanente Colorado among adults with serious illness deceased between January 1, 2016, and June 30, 2019. Portal use was categorized into engagement types: no use, nonactive, active without a provider, and active with a provider. EOL outcomes were hospitalizations in the month before death, last-year advance directive completion, and hospice use. Association between EOL outcomes and levels of portal use was assessed using χ2 statistics and generalized linear models. Results: Higher portal engagement types were associated with higher rates of hospitalizations (p = 0.0492), advance directive completion (p = 0.0226), and hospice use (p = 0.0070). Conclusion: Portal use in the last year of life was associated with increases in a poor EOL outcome, hospitalizations, and beneficial EOL outcomes, advance directives, and hospice care.
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