From the Mercy Health Hauenstein Neurosciences (J.N.P.), Trinity Health, Michigan State University, Grand Rapids; Department of Neurology (J.B.), Department of Supportive Care Medicine, Cedars-Sinai Medical Center, Los Angeles, CA; Department of Neurology (L.A.F.), University of Colorado, Aurora; Department of Medicine (Section of Palliative Medicine) (N.M.K.), Department of Neurology, Rush University Medical Center, Chicago, IL; Department of Neurology (S.M.), Department of Medicine (Palliative Division), Hennepin Healthcare, Minneapolis, MN; Palliative Care Program (A.K.M.), Department of Medicine, University of California, Los Angeles Health, CA; and Johns Hopkins Bayview Medical Center (A.K.M.), Baltimore, MD.
Neurology. 2020 Oct 27;95(17):782-788. doi: 10.1212/WNL.0000000000010831. Epub 2020 Sep 15.
To describe some current models of outpatient neuropalliative care (NPC) available to patients with amyotrophic lateral sclerosis at different institutions within the United States.
Six NPC physicians were asked to contribute written descriptions about the PC available in their ALS clinics. Descriptions were then compiled and assessed for similarities and differences.
All clinics are multidisciplinary, with regular appointments every 3 months and similar appointment times for new visits (60-120 minutes) and follow-up visits (20-45 minutes). Four clinics have an NPC specialist embedded within the ALS clinic, 1 institution has a separate clinic for NPC, and 1 institution has both. The NPC physician at 5 institutions is a neurologist with formal palliative care training and at 1 institution is an internist with formal palliative care training. NPC is part of routine care for all patients at 2 institutions, and the primary reasons for consultation are goals of care (GOC) and severe symptom management.
NPC is provided to patients with ALS heterogeneously throughout the United States with some variation in services and delivery, but all clinics are addressing similar core needs. Given the poor prognosis and high PC needs, those with ALS are the ideal patients to receive NPC. Future studies are necessary given the paucity of data available to determine best practices and to better define meaningful outcomes.
描述美国不同医疗机构中为肌萎缩侧索硬化症患者提供的门诊神经姑息治疗（NPC）的一些现有模式。
我们邀请了 6 名 NPC 医生，要求他们对自己所在 ALS 诊所提供的 PC 进行书面描述。然后对这些描述进行汇编和评估，以找出相似点和不同点。
所有的诊所都是多学科的，每 3 个月有一次定期预约，新就诊（60-120 分钟）和随访（20-45 分钟）的预约时间相似。4 家诊所的 NPC 专家嵌入在 ALS 诊所内，1 家机构有单独的 NPC 诊所，还有 1 家机构两者兼有。5 家机构的 NPC 医生是具有正规姑息治疗培训背景的神经科医生，1 家机构的 NPC 医生是具有正规姑息治疗培训背景的内科医生。有 2 家机构将 NPC 作为所有患者常规护理的一部分，主要咨询目的是了解患者的治疗目标和管理严重症状。
美国各地的 ALS 患者接受 NPC 的方式存在差异，但服务和提供方式存在差异，所有诊所都在满足类似的核心需求。鉴于预后不良和高度的 PC 需求，ALS 患者是接受 NPC 的理想人群。鉴于现有数据的缺乏，未来有必要开展研究，以确定最佳实践，并更好地定义有意义的结果。
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