Biogen, Cambridge, MA, USA.
Biogen, Cambridge, MA, USA.
J Neurol Sci. 2023 Sep 15;452:120764. doi: 10.1016/j.jns.2023.120764. Epub 2023 Aug 26.
People with amyotrophic lateral sclerosis (pALS) require complex, multi-disciplinary care, resulting in extensive healthcare resource utilization (HCRU). To investigate the relationship between HCRU and ALS progression, the study objectives were (i) to characterize HCRU in pALS and (ii) to establish whether this varied according to disease stage, as defined using three different methodologies: neurologist-defined early/mid/late stage, the King's clinical staging system for ALS, and the Milan Torino Staging system for ALS (MiToS). Real-world data were drawn from the Adelphi ALS Disease-Specific Programme™, a point-in-time survey of neurologists in France, Germany, Italy, Spain, the UK, and the USA conducted July 2020-March 2021. The analysis included survey responses from 142 physicians with respect to 880 pALS. With advancing ALS stage, significant differences were observed in the number of healthcare professional consultations and X-rays per person (both p < 0.05 for all staging systems), and the proportion of pALS with emergency room admissions, intensive care unit admissions, and assisted ventilation (all p < 0.05 for all staging systems). Across stages, >55% of pALS received care from a general neurologist and a general/primary care practitioner. With increasing stage, there was a significant difference in the proportion receiving care from a physical therapist, pulmonologist/respiratory care practitioner, respiratory therapist, speech/language therapist, and palliative care team, and in the proportion receiving care only from professional caregivers (all p < 0.05 for all staging systems). This study confirmed the substantial HCRU required to support pALS through all stages of ALS and highlighted an increasing need for healthcare resources as the disease progresses.
肌萎缩侧索硬化症（pALS）患者需要复杂的多学科护理，导致广泛的医疗资源利用（HCRU）。为了研究 HCRU 与 ALS 进展之间的关系，本研究的目的是（i）描述 pALS 的 HCRU，（ii）确定根据疾病阶段是否存在差异，疾病阶段的定义采用三种不同的方法：神经病学家定义的早期/中期/晚期，ALS 的 King 临床分期系统，以及 ALS 的米兰-都灵分期系统（MiToS）。真实世界的数据来自 Adelphi ALS 疾病专项计划™，这是一项 2020 年 7 月至 2021 年 3 月在法国、德国、意大利、西班牙、英国和美国进行的针对神经病学家的时点调查。分析包括 142 名医生对 880 名 pALS 的调查答复。随着 ALS 阶段的进展，每个患者的医疗保健专业人员咨询次数和 X 射线数量均存在显著差异（所有分期系统的 p 值均<0.05），并且急诊入院、重症监护病房入院和辅助通气的 pALS 比例也存在显著差异（所有分期系统的 p 值均<0.05）。在所有阶段，>55%的 pALS 接受普通神经科医生和普通/初级保健医生的治疗。随着阶段的增加，接受物理治疗师、肺病专家/呼吸治疗师、呼吸治疗师、言语/语言治疗师和姑息治疗团队治疗的比例以及仅接受专业护理人员治疗的比例存在显著差异（所有分期系统的 p 值均<0.05）。本研究证实了在 ALS 的所有阶段支持 pALS 需要大量的 HCRU，并强调了随着疾病的进展，对医疗资源的需求不断增加。
