Dave Kuldip D, Oskarsson Björn, Yersak Jill, Krauss Ramona, Heiman-Patterson Terry, Lomen-Hoerth Catherine, Selig Wendy K D, Halpern Paul Ilisa, Schaeffer Melody, Garcia-Trujillo Brittany, Waldo Daniel, Thakur Neil, Babu Suma
The ALS Association, Arlington, VA, USA.
Mayo Clinic, Jacksonville, FL, USA.
Amyotroph Lateral Scler Frontotemporal Degener. 2025 May;26(3-4):215-224. doi: 10.1080/21678421.2024.2432034. Epub 2024 Dec 10.
To evaluate neurologists and other clinicians' contributions to U.S. ALS diagnostic timelines. : Over the past two decades, the average time to ALS diagnosis in the U.S. has remained unchanged at 12 months. ALS patients see 3-4 clinicians prior to referral to an ALS specialist for diagnosis confirmation and/or treatment initiation. There is an urgent need to identify where delays occur, so that targeted clinician awareness may be raised about early suspicion and referrals. : Review of Medicare claims database for health care utilization patterns by ALS beneficiaries during diagnostic journey. Survey of typical clinic wait times for new consultations reported by 75-78 ALS Certified Treatment Centers of Excellence (2019-2021). : During 2011-2021, 78,520 Medicare beneficiaries were diagnosed with ALS (T0). The mean (median) timelines between first neurologist ambulatory visit and T0, is 16.5 (11.0) months; mean ± SD for ALS/neuromuscular providers being 9.6 ± 12.6 months versus 16.7 ± 17.5 months for non-neuromuscular neurologists. During the 12-months preceding T0, an ALS patient undergoes median(max) 1.5(4.0) brain-MRIs, 1.6(6.0) spine-MRIs, and 1.3(4.0) electromyography studies. Greater than 75% of ALS centers consistently report ≤ 4 week wait times for new ALS consults. This study introduces "thinkALS," an easy-to-use clinical diagnostic and referral guide for non-ALS neurologists to tackle this challenge. This study is the first to provide metrics on how non-neuromuscular/ALS specialists contribute to ALS diagnostic timelines in the U.S.
评估神经科医生和其他临床医生对美国肌萎缩侧索硬化症（ALS）诊断时间线的影响。：在过去二十年中，美国ALS诊断的平均时间一直保持在12个月不变。ALS患者在被转诊至ALS专科医生进行诊断确认和/或开始治疗之前会看3 - 4名临床医生。迫切需要确定延迟发生的环节，以便有针对性地提高临床医生对早期怀疑和转诊的认识。：审查医疗保险索赔数据库，以了解ALS受益患者在诊断过程中的医疗保健利用模式。对75 - 78家ALS认证卓越治疗中心（2019 - 2021年）报告的新会诊典型诊所等待时间进行调查。：在2011 - 2021年期间，78520名医疗保险受益患者被诊断为ALS（T0）。从首次神经科门诊就诊到T0的平均（中位数）时间线为16.5（11.0）个月；ALS/神经肌肉专科医生的平均时间为9.6±12.6个月，而非神经肌肉神经科医生为16.7±17.5个月。在T0前的12个月内，一名ALS患者接受的脑部MRI检查中位数（最大值）为1.5（4.0）次，脊柱MRI检查为1.6（6.0）次，肌电图检查为1.3（4.0）次。超过75%的ALS中心一直报告新ALS会诊的等待时间≤4周。本研究推出了“thinkALS”，这是一个供非ALS神经科医生使用的易于操作的临床诊断和转诊指南，以应对这一挑战。本研究首次提供数据，说明非神经肌肉/ALS专科医生对美国ALS诊断时间线的影响。
