Hollin Ilene L, Giler Gema, Heiman-Patterson Terry D
From the Temple University College of Public Health (I.L.H.); Thomas Jefferson University (G.G.); and Department of Neurology (T.D.H.-P.), Lewis Katz School of Medicine at Temple University, Philadelphia, PA.
Neurology. 2025 Feb 25;104(4):e210015. doi: 10.1212/WNL.0000000000210015. Epub 2025 Jan 30.
Clinical care for people living with amyotrophic lateral sclerosis (PLWALS) is directed at slowing disease progression and symptom management. The American Academy of Neurology recommends a multidisciplinary approach to providing ALS health care because observational studies show that multidisciplinary clinics (MDCs) extend survival and improve quality of life. However, providing multidisciplinary care is a challenging financial proposition. To understand how MDCs are financed, we surveyed ALS MDCs across the Northeast ALS Consortium network in the United States.
We surveyed clinic directors in the Northeast ALS Consortium, a group of institutions equipped to provide ALS care and perform research and clinical trials in ALS. Respondents (n = 61; response rate = 49.6%) provided information regarding their care model, services, funding sources, and financial solvency between December 2020 and August 2021.
In 74% (n = 45) of clinics, PLWALS were seen by the entire multidisciplinary team, and in 26% (n = 16) of clinics, PLWALS were seen by the physician and triaged according to needs. In 79% (n = 48) of clinics, visit duration was ≥3 hours, and on average, 8.4 services were available, compared with 6.8 in clinics lasting <3 hours. Most of the MDCs offer occupational (97%; n = 59), speech (97%; n = 59), and physical (95%; n = 58) therapies on site. The most common source of financial support was third-party nonprofits/philanthropy (92%; n = 56). Fifty-nine percent (n = 36) of clinics received financial support from their parent organizations (e.g., universities). Only 17% (n = 10) of clinics reported no deficit, and all clinics used multiple income sources.
These findings reconfirm the range of services available to PLWALS and highlight the financial challenges facing ALS MDCs. The main limitation is that recruitment was through the NEALS network which primarily includes MDCs, so we were not able to compare with non-MDCs. Since not all centers responded, there may be other differences in the characteristics of the centers that did respond and those that did not leading to some bias. Future work should support the goal of reducing reliance on funding from nonprofits and increase reimbursement from payers, so health care providers can provide high-quality ALS care and cover costs.
肌萎缩侧索硬化症患者（PLWALS）的临床护理旨在减缓疾病进展并进行症状管理。美国神经病学学会建议采用多学科方法提供肌萎缩侧索硬化症医疗保健，因为观察性研究表明，多学科诊所（MDCs）可延长生存期并提高生活质量。然而，提供多学科护理在财务方面具有挑战性。为了解多学科诊所的资金来源，我们对美国东北肌萎缩侧索硬化症联盟网络中的肌萎缩侧索硬化症多学科诊所进行了调查。
我们对东北肌萎缩侧索硬化症联盟的诊所主任进行了调查，该联盟是一组有能力提供肌萎缩侧索硬化症护理并开展肌萎缩侧索硬化症研究和临床试验的机构。在2020年12月至2021年8月期间，受访者（n = 61；回复率 = 49.6%）提供了有关其护理模式、服务、资金来源和财务偿付能力的信息。
在74%（n = 45）的诊所中，整个多学科团队会诊治肌萎缩侧索硬化症患者；在26%（n = 16）的诊所中，由医生诊治肌萎缩侧索硬化症患者并根据需求进行分诊。在79%（n = 48）的诊所中，就诊时长≥3小时，平均提供8.4项服务，而就诊时长<3小时的诊所平均提供6.8项服务。大多数多学科诊所现场提供职业治疗（97%；n = 59）、言语治疗（97%；n = 59）和物理治疗（95%；n = 58）。最常见的资金支持来源是第三方非营利组织/慈善机构（92%；n = 56）。59%（n = 36）的诊所从其母体组织（如大学）获得资金支持。只有17%（n = 10）的诊所报告无赤字，所有诊所都使用多种收入来源。
这些发现再次证实为肌萎缩侧索硬化症患者提供的服务范围，并突出了肌萎缩侧索硬化症多学科诊所面临的财务挑战。主要局限性在于招募是通过东北肌萎缩侧索硬化症联盟网络进行的，该网络主要包括多学科诊所，因此我们无法与非多学科诊所进行比较。由于并非所有中心都做出回应，做出回应的中心与未做出回应的中心在特征上可能存在其他差异，从而导致一些偏差。未来的工作应支持减少对非营利组织资金依赖并增加付款方报销的目标，以便医疗服务提供者能够提供高质量的肌萎缩侧索硬化症护理并覆盖成本。
