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Whether and how to store firearms in the home: Qualitative insights from care partner experiences in the Safety in Dementia Trial. 是否以及如何在家中存放枪支:从痴呆症安全试验中护理伙伴的经验中获得的定性见解。
Pub Date : 2024-10-25 DOI: 10.1111/jgs.19242
Christopher E Knoepke, Kayla Meza, Jennifer D Portz, Megan L Ranney, Stacy M Fisher, Faris Omeragic, Emily Greenway, Mirella Castaneda, Daniel D Matlock, Marian E Betz

Background: Most people with dementia (PWD) in the United States live in community settings supported by family and/or unpaid care partners. Firearms access is one of many decisions care partners navigate alongside PWD in efforts to prevent injuries and deaths. Conversations about firearms access are socially challenging, although specific challenges to be overcome have not been described.

Methods: As part of the larger Safety in Dementia Trial, we interviewed care partners about their views and experiences regarding firearms access in the home where the PWD resides. Interviewees were English-speaking adults (≥18 years) in the United States who are unpaid care partners of community-dwelling PWD. Responses to interview discussions related to (1) a desire for safety, and (2) fear of firearm violence was analyzed using a focusing process to categorize views into essential themes.

Results: Fifty care partners, who were primarily female (58%), White (66%), adult children (56%), and living in the same household (64%), participated in interviews between February 2023-February 2024. Dominant themes emerging from the focusing technique included (1) firearms as a necessary component of home safety; (2) fear of accidental/impulsive firearm violence; (3) observed risk and "near misses"; and (4) differing views on home firearms as a source of conflict. Thematic descriptions did not differ according to care partner's relationship to the PWD (adult child, spouse, other).

Conclusions: Considering whether and how to alter access to firearms where PWD reside can be difficult for care partners to navigate. Care partners expressed a desire to limit firearms access, but worried both about creating conflict with the PWD and the self-defense implications of making firearms inaccessible. Findings were similar across subsets of care partners indicating that standardized tools and messaging to care partners may be effective in promoting safety in homes with PWD.

背景:在美国,大多数痴呆症患者(PWD)都生活在由家人和/或无偿护理伙伴支持的社区环境中。在预防伤害和死亡的工作中,枪支使用权是护理伙伴与痴呆症患者共同做出的众多决定之一。关于使用枪支的对话在社会上具有挑战性,但具体需要克服的挑战尚未描述:作为 "痴呆症安全试验 "的一部分,我们采访了护理伙伴,了解他们对残疾人家中使用枪支的看法和经验。受访者是美国讲英语的成年人(≥18 岁),他们是居住在社区的残疾人的无偿护理伙伴。我们采用聚焦法分析了受访者对有关(1)渴望安全和(2)害怕枪支暴力的访谈讨论的回应,并将观点归类为基本主题:在 2023 年 2 月至 2024 年 2 月期间,50 名护理伙伴参加了访谈,他们主要是女性(58%)、白人(66%)、成年子女(56%)和生活在同一家庭(64%)。聚焦技术产生的主要议题包括:(1)枪支是家庭安全的必要组成部分;(2)对意外/冲动性枪支暴力的恐惧;(3)观察到的风险和 "险情";以及(4)对家庭枪支作为冲突根源的不同看法。主题描述并不因护理伙伴与残疾人的关系(成年子女、配偶、其他)而有所不同:对于护理伙伴来说,考虑是否以及如何改变残疾人居住地的枪支获取途径可能会很困难。护理伙伴表达了限制接触枪支的愿望,但又担心与残疾人产生冲突,以及无法接触枪支对自卫的影响。不同护理伙伴子集的调查结果相似,这表明向护理伙伴提供标准化工具和信息可能会有效促进残疾人家庭的安全。
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引用次数: 0
Assessing causality in deprescribing studies: A focus on adverse drug events and adverse drug withdrawal events. 评估停药研究中的因果关系:重点关注不良药物事件和不良停药事件。
Pub Date : 2024-10-24 DOI: 10.1111/jgs.19241
Xiaojuan Li, Elizabeth A Bayliss, M Alan Brookhart, Matthew L Maciejewski

Generating real-world evidence about the effect of medication discontinuation or dose reduction on outcomes, such as reduction of adverse drug effects (ADE; intended benefit) and occurrence of adverse drug withdrawal events (ADWE; unintended harm), is crucial to informing deprescribing decisions. Determining the causal effects of deprescribing is difficult for many reasons, including lack of randomization in real-world study designs and other design and measurement issues that pose threats to internal validity. The inherent challenge is how to identify the effects, both intended benefits and unintended harms, of a new medication stoppage or reduction when implemented in patients with many potential clinical and social risks that may influence the likelihood of deprescribing as well as outcomes. We discuss methodological issues of estimating the effect of medication discontinuation or reduction on risk of ADEs and ADWEs considering: (1) sampling study populations of sufficient size with the potential to demonstrate clinically meaningful and quantifiable outcomes, (2) accurate and appropriately timed measurement of covariates, outcomes, and discontinuation, and (3) statistical approaches to managing confounding and other biases inherent in long-term medication use by individuals with multiple morbidities. Designing rigorous deprescribing studies that address internal validity threats will support evidence generation by improving the ability to assess benefits and harms when the exposure of interest is the absence of a medication. Iterative learnings about data quality, variable definition, variable measurement, and exposure-outcome associations will inform strategies to improve the causal inferences possible in real-world deprescribing studies.

就停药或减少剂量对结果(如减少药物不良反应(ADE;预期获益)和发生停药不良事件(ADWE;意外伤害))的影响提供真实世界的证据,对于为停药决策提供信息至关重要。由于多种原因,确定去处方化的因果效应十分困难,包括现实世界研究设计中缺乏随机性,以及对内部有效性构成威胁的其他设计和测量问题。内在的挑战在于如何确定新药停用或减量的效果,包括预期的益处和意外的危害,因为患者有许多潜在的临床和社会风险,这些风险可能会影响停药的可能性和结果。我们讨论了估计停药或减药对 ADEs 和 ADWEs 风险影响的方法学问题,其中考虑到:(1) 足够规模的研究人群取样,这些人群有可能展示出有临床意义且可量化的结果;(2) 对协变量、结果和停药进行准确且适时的测量;(3) 采用统计方法管理混杂因素以及患有多种疾病的患者长期用药过程中固有的其他偏差。设计能解决内部有效性威胁的严格的停药研究,将能提高在不用药的情况下评估获益和危害的能力,从而为证据的生成提供支持。在数据质量、变量定义、变量测量和暴露-结果关联等方面的迭代学习将为改进真实世界去处方化研究中的因果推论提供策略信息。
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引用次数: 0
Prognostic understanding among caregivers of persons with dementia: A scoping review. 痴呆症患者照顾者对预后的理解:范围综述。
Pub Date : 2024-10-24 DOI: 10.1111/jgs.19245
Ishwarya Balasubramanian, Ellie Bostwick Andres, Louisa Camille Poco, Chetna Malhotra

Introduction: Despite the influence of caregivers' prognostic understanding (PU) on the end-of-life care for persons with dementia (PwDs), the literature on PU of caregivers of PwDs is sparse. We conducted a scoping review to understand the variation in existing definitions and measurement of caregivers' PU for PwDs. We also aimed to synthesize the prevalence of caregivers' correct PU and the factors (caregiver, PwD and healthcare related) associated with it.

Methods: We systematically searched four databases-MEDLINE/PubMed, EMBASE, SCOPUS, and CINAHL. We included studies where study participants were informal caregivers, their PU was assessed, and measurement tool was implicitly described. We excluded studies where study participants were paid caregivers.

Results: Out of the 2160 studies screened, we included 15 published between 2009 and 2023. The included studies measured caregivers' PU as limited estimated life expectancy, understanding that dementia is incurable and life-limiting. Estimated life expectancy was the most common measure of PU among caregivers to PwDs. Across studies, around 90% of caregivers acknowledged dementia as incurable, while only about 40% acknowledged it as life-limiting. Caregivers of PwDs who were sicker (acute medical problems or functional dependence) and those who had discussed goals of care with healthcare providers were more likely to have more accurate PU for PwDs. Caregivers' with better PU were more likely to state a preference for comfort-focused care, and their PwDs were likely to receive fewer burdensome interventions and experience greater comfort during the dying process.

Conclusion: Our findings highlight the need for a comprehensive measure to assess the multifaceted nature of caregivers' PU, delve deeper into factors influencing caregivers' PU, and explore its impact on caregivers themselves.

导言:尽管护理者的预后理解(PU)对痴呆症患者(PwDs)的临终关怀有影响,但有关痴呆症患者护理者预后理解的文献却很少。我们进行了一次范围综述,以了解对痴呆症患者护理者预后评估的现有定义和测量方法的差异。我们还旨在总结护理人员正确使用 PU 的普遍程度以及与之相关的因素(护理人员、残疾人和医疗保健相关因素):我们系统地检索了四个数据库--MEDLINE/PubMed、EMBASE、SCOPUS 和 CINAHL。我们纳入了研究参与者为非正规护理人员、对其 PU 进行了评估并隐含描述了测量工具的研究。我们排除了研究参与者为有偿照护者的研究:在筛选出的 2160 项研究中,我们纳入了 15 项发表于 2009 年至 2023 年的研究。所纳入的研究以有限的预期寿命来衡量照护者的 PU,因为痴呆症是无法治愈且会限制寿命的疾病。估计预期寿命是衡量残疾人护理者 PU 的最常见指标。在所有研究中,约 90% 的照护者认为痴呆症是不可治愈的,而只有约 40% 的照护者认为痴呆症是有生命限制的。病情较重(有急性医疗问题或功能依赖)的残疾人照护者以及与医疗服务提供者讨论过照护目标的照护者更有可能对残疾人有更准确的 PU。PU较好的照护者更有可能表示倾向于以舒适为重点的照护,其照护的残疾人在临终过程中可能会接受较少的繁琐干预并体验到更多的舒适:我们的研究结果突出表明,需要一种全面的测量方法来评估照护者临终关怀的多面性,深入研究影响照护者临终关怀的因素,并探讨其对照护者自身的影响。
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引用次数: 0
Why do older adults stop cancer screening? Findings from the Medicare Current Beneficiary Survey. 老年人为何停止癌症筛查?医疗保险当前受益人调查的结果。
Pub Date : 2024-10-23 DOI: 10.1111/jgs.19239
Olivia H Belliveau, Ilana B Richman

Background: Prostate and breast cancer screening are prevalent among older adults, even among those unlikely to benefit. We aimed to evaluate why older adults stop cancer screening, including the role of physician recommendations.

Methods: We used nationally representative data from the 2019 Medicare Current Beneficiary Survey (MCBS). We included women aged 76 and older without a history of breast cancer and men aged 71 and older without a history of prostate cancer. The primary outcome was reason for discontinuing screening, categorized as follows: (1) physician recommendation against screening; (2) absence of a recommendation to screen; and (3) patient-driven reason, such as patient preferences or beliefs. We evaluated reasons for screening discontinuation by health status and educational attainment using age-stratified multinomial logistic regression.

Results: The sample included 7350 participants representing a weighted population of 22,498,715. Overall, 53% of women underwent screening mammography in the past year or intended to continue screening. Among those who stopped screening, 5% reported a recommendation to stop screening from their doctor, 48% reported no recommendation, and 32% reported a patient-driven reason for cessation. Findings did not differ by educational attainment or health status, including among the oldest patients. For men, 61% were screened with PSA in the past year or intended to continue. Among those who stopped, 3% reported a recommendation against screening, 54% reported no recommendation, and 27% reported a patient-driven reason for cessation. Men with higher educational attainment were more likely to report that their physician recommended against screening (4% vs. 1%, p = 0.01) and that their doctor did not recommend screening (58% vs. 47%, p = 0.01). Reasons for screening cessation did not differ by health status, including among the oldest patients.

Conclusions: Cancer screening remains common, even among those with limited potential for benefit, but discussions around screening cessation are rare. Improving communication between patients and physicians may improve screening decision quality.

背景:前列腺癌和乳腺癌筛查在老年人中很普遍,甚至在那些不太可能受益的老年人中也是如此。我们旨在评估老年人停止癌症筛查的原因,包括医生建议的作用:我们使用了 2019 年医疗保险当前受益人调查 (MCBS) 中具有全国代表性的数据。我们纳入了 76 岁及以上无乳腺癌病史的女性和 71 岁及以上无前列腺癌病史的男性。主要结果是停止筛查的原因,分类如下:(1)医生建议不要进行筛查;(2)没有建议进行筛查;(3)患者驱动的原因,如患者的偏好或信仰。我们使用年龄分层多叉逻辑回归法评估了不同健康状况和教育程度的人停止筛查的原因:样本包括 7350 名参与者,加权人口为 22,498,715 人。总体而言,53%的妇女在过去一年中接受了乳腺放射摄影筛查或打算继续接受筛查。在停止筛查的妇女中,5%的人表示医生建议她们停止筛查,48%的人表示没有医生建议,32%的人表示停止筛查的原因是由患者决定的。不同教育程度或健康状况的患者,包括年龄最大的患者,在筛查结果上没有差异。61%的男性患者在过去一年中接受了 PSA 筛查或打算继续接受筛查。在停止筛查的患者中,3%的人表示收到了反对筛查的建议,54%的人表示没有收到建议,27%的人表示停止筛查的原因是由患者决定的。教育程度较高的男性更有可能报告其医生建议不要进行筛查(4% 对 1%,P = 0.01),也更有可能报告其医生不建议进行筛查(58% 对 47%,P = 0.01)。停止筛查的原因不因健康状况而异,包括年龄最大的患者:结论:癌症筛查仍然很普遍,即使在潜在获益有限的人群中也是如此,但围绕停止筛查的讨论却很少见。改善患者与医生之间的沟通可提高筛查决策的质量。
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引用次数: 0
Differences in setting of initial dementia diagnosis among fee-for-service Medicare beneficiaries. 付费医疗保险受益人初次诊断痴呆症的背景差异。
Pub Date : 2024-10-22 DOI: 10.1111/jgs.19236
Elizabeth M White, Thomas Bayer, Cyrus M Kosar, Christopher M Santostefano, Ulrike Muench, Hyesung Oh, Emily A Gadbois, Pedro L Gozalo, Momotazur Rahman

Background: Accurate and timely diagnosis of dementia is necessary to allow affected individuals to make informed decisions and access appropriate resources. When dementia goes undetected until a hospitalization or nursing home stay, this could reflect delayed diagnosis or misdiagnosis, and may reflect underlying disparities in healthcare access.

Methods: In this retrospective cohort study, we used 2012-2020 Medicare claims and other administrative data to examine variation in setting of dementia diagnosis among fee-for-service Medicare beneficiaries with an initial claims-based dementia diagnosis in 2016. We used multinomial logistic regression to evaluate the association of person and geographic factors with diagnosis location, and Cox proportional hazards regression to examine 4-year survival relative to diagnosis location.

Results: Among 754,204 Medicare beneficiaries newly diagnosed with dementia in 2016, 60.3% were diagnosed in the community, 17.2% in hospitals, and 22.5% in nursing homes. Adjusted 4-year survival rates were significantly lower among those diagnosed in hospitals [-16.1 percentage points (95% CI: -17.0, -15.1)] and nursing homes [-16.8 percentage points (95% CI: -17.7, -15.9)], compared to those diagnosed in the community. Community-diagnosed beneficiaries were more often female, younger, Asian or Pacific Islander, Native American or Alaskan Native, Hispanic, had fewer baseline hospitalizations and higher homecare use, and resided in wealthier ZIP codes. Rural beneficiaries were more likely to be diagnosed in hospitals.

Conclusions: Many older adults are diagnosed with dementia in a hospital or nursing home. These individuals have significantly lower survival than those diagnosed in the community, which may indicate diagnosis during an acute illness or care transition, or at a later disease stage, all of which are suboptimal. These results highlight the need for improved dementia screening in the general population, particularly for individuals in rural areas and communities with higher social deprivation.

背景:准确及时地诊断痴呆症对患者做出明智决策和获得适当资源十分必要。如果痴呆症直到住院或入住疗养院时才被发现,这可能反映出诊断延迟或误诊,也可能反映出医疗保健服务的潜在差异:在这项回顾性队列研究中,我们使用了 2012-2020 年的医疗保险报销单和其他管理数据,研究了 2016 年初次报销单诊断为痴呆症的付费医疗保险受益人中痴呆症诊断环境的变化。我们使用多叉逻辑回归评估了个人和地理因素与诊断地点的关联,并使用 Cox 比例危险回归检验了与诊断地点相关的 4 年生存率:在2016年新确诊为痴呆症的754204名医疗保险受益人中,60.3%在社区确诊,17.2%在医院确诊,22.5%在疗养院确诊。与在社区确诊的患者相比,在医院确诊的患者[-16.1个百分点(95% CI:-17.0,-15.1)]和疗养院确诊的患者[-16.8个百分点(95% CI:-17.7,-15.9)]调整后的4年生存率明显较低。社区确诊的受益人多为女性、年轻、亚裔或太平洋岛民、美国原住民或阿拉斯加原住民、西班牙裔、基线住院次数较少、家庭护理使用率较高、居住在较富裕的邮政编码内。农村受益人更有可能在医院确诊:结论:许多老年人是在医院或养老院被诊断出患有痴呆症的。这些人的存活率明显低于在社区确诊的患者,这可能表明他们是在急性疾病或护理过渡期间或疾病晚期确诊的,所有这些情况都不理想。这些结果凸显了在普通人群中改进痴呆症筛查的必要性,尤其是对农村地区和社会贫困程度较高的社区的痴呆症患者而言。
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引用次数: 0
What's old is new again: Affordable, community-based housing options for older women. 旧貌换新颜:为老年妇女提供可负担得起的、以社区为基础的住房选择。
Pub Date : 2024-10-22 DOI: 10.1111/jgs.19230
Zoë Mohan, Mahnaz Khomamizadeh, Joyce M Li, Paula A Rochon
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引用次数: 0
Dermatoporosis in a portrait by Eero Järnefelt (1863-1937). 埃罗-耶内费尔特(1863-1937 年)肖像画中的皮肤病。
Pub Date : 2024-10-21 DOI: 10.1111/jgs.19240
Nicolas Kluger
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引用次数: 0
Let home care be the GUIDE: Integrating quality dementia care into existing home care teams. 让家庭护理成为 GUIDE:将高质量的痴呆症护理融入现有的家庭护理团队。
Pub Date : 2024-10-21 DOI: 10.1111/jgs.19237
Rebecca J Howe, Jane A Driver, Christine S Ritchie, Ellen M McCreedy, Jennifer L Sullivan
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引用次数: 0
Kidney Disease Aging Research Collaborative (KDARC): Addressing barriers in geriatric nephrology research. 肾病老年研究合作组织(KDARC):消除老年肾脏病研究中的障碍。
Pub Date : 2024-10-21 DOI: 10.1111/jgs.19229
Rasheeda Hall, Nidhi Ghildayal, Ilana Mittleman, Megan Huisingh-Scheetz, Jennifer S Scherer, Mara McAdams-DeMarco
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引用次数: 0
Capacity assessment for euthanasia in dementia: A qualitative study of 60 Dutch cases. 痴呆症患者安乐死的能力评估:对 60 个荷兰案例的定性研究。
Pub Date : 2024-10-21 DOI: 10.1111/jgs.19218
Arne van den Bosch, Radboud M Marijnissen, Denise J C Hanssen, Richard C Oude Voshaar

Background: The number of patients with dementia who are granted euthanasia or assisted suicide (EAS) increases yearly in the Netherlands. By law, patients need to be decisionally competent or have an advance directive. Assessment of decisional capacity is challenging as dementia progressively affects cognitive performance. We aimed to assess qualitatively which factors, and how, influence the judgment of decisional capacity in EAS cases with dementia.

Methods: We performed a qualitative study of 60 dementia EAS case summaries published by the Dutch regional euthanasia review committees between 2012 and 2021. Included reports were evaluated using the grounded theory approach. All quotes related to decisional capacity were coded independently by two researchers and compared in an iterative process to formulate an overarching framework on the assessment of decisional capacity. We selected 20 patients who had an advance directive and were judged to be decisionally compromised, as well as a selection of 40 EAS cases judged to be decisionally competent, half of which also had an advance directive (purposive sampling).

Results: Decisional capacity was present in every case report. Predefined, external criteria were rarely described explicitly, but physicians indirectly referred to the (cognitive) criteria set by Appelbaum and Grisso. Whether the thresholds for these dimensional criteria were met was influenced by six supporting factors (level of communication, psychiatric comorbidity, personality, presence of an advance directive, consistency of the request, and, finally, the patient-physician relationship) that also directly contributed to the judgment of capacity. The involved physicians and executed investigations were the two contextual factors providing a background.

Conclusions: Decisional capacity regarding euthanasia is a multidimensional construct, often implicitly assessed and influenced by supporting and contextual factors. The subjectivity of the final judgment poses ethical and legal issues and argues for continuous quality improvement processes.

背景:在荷兰,获准安乐死或协助自杀(EAS)的痴呆症患者人数逐年增加。根据法律规定,患者需要具备决策能力或预先指示。由于痴呆症会逐渐影响患者的认知能力,因此评估患者的决策能力具有挑战性。我们旨在定性评估哪些因素以及如何影响对痴呆症 EAS 病例决策能力的判断:我们对荷兰地区安乐死审查委员会在 2012 年至 2021 年间发布的 60 份痴呆症安乐死案例摘要进行了定性研究。我们采用基础理论方法对纳入的报告进行了评估。所有与决定能力相关的引文均由两名研究人员独立编码,并通过反复比较,最终制定出一个评估决定能力的总体框架。我们选取了 20 名有预先指示且被判定为决策能力受损的患者,并选取了 40 个被判定为有决策能力的 EAS 病例,其中一半也有预先指示(目的性抽样):结果:每份病例报告中都存在决策能力问题。预设的外部标准很少被明确描述,但医生间接提到了阿贝尔鲍姆(Appelbaum)和格里斯索(Grisso)制定的(认知)标准。是否符合这些维度标准的阈值受到六个辅助因素的影响(沟通水平、精神疾病合并症、性格、是否有预先指示、请求的一致性,以及最后的医患关系),这些因素也直接影响了对行为能力的判断。参与调查的医生和已执行的调查是两个背景因素:关于安乐死的决定能力是一个多维度的概念,通常是隐性评估,并受到支持因素和背景因素的影响。最终判断的主观性带来了伦理和法律问题,因此需要不断改进质量。
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引用次数: 0
期刊
Journal of the American Geriatrics Society
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