Clinician Education Initiatives for General Neurologists on ALS: Why It Is Needed and ThinkALS, a Possible Solution
Suma Babu1, Jill Yersak2, Ramona Krauss3, Bjorn Oskarsson4, Terry Heiman-Patterson5, Catherine Lomen-Hoerth6, Dan Waldo3, Wendy Selig7, Ilisa Halpern Paul8, Kuldip Dave9, Neil Thakur9
1Massachusetts General Hospital, Brigham, Harvard, 2Amylyx, 3Actuarial Research Corporation, 4Mayo Clinic, 5Temple University Lewis Katz School of Medicine, 6UCSF, 7WSCollaborative LLC, 8Venable LLP, 9ALS Association
Objective:
(a) To understand how general neurologists and other providers contribute to ALS diagnostic timelines in the U.S and (b) to develop clinician education tools for facilitating early suspicion and prompt referrals to multidisciplinary ALS centers.
Background:

Over the past 2 decades, in the US, the average time to ALS diagnosis has remained steady at 12 months, and is followed by a median survival of 18 months. These delays can result in missed or delayed opportunities for optimal care and research. 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 benefits of early referral to multidisciplinary ALS centers.

 

Design/Methods:
(a) Retrospective review of Medicare claims database for patterns of health care utilization by ALS patients at various predefined time intervals prior to ALS diagnosis (T0). This included ambulatory care provided by general neurologists versus other physician types and (b) Annual surveys of ~75 Certified Treatment Centers of Excellence (CY2019-2021) on average wait times to new referral consultations.
Results:

During CY2011-2021, 78,520 Medicare beneficiaries were diagnosed with ALS (T0) while enrolled in the program. The mean(median) delay between first general neurologist ambulatory visit and T0, is 16.5(11.0) months. During 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.  >75% of CTCEs consistently report < 4 week wait times for new ALS patient consults. A “thinkALS” tool was developed as an easy-to-use clinical diagnostic and referral guide by iterative process and vetted by ALS experts and is being widely disseminated for routine use by non-ALS neurologists.

Conclusions:
This study is first to provide metrics on how non-ALS/general neurologists contribute to ALS diagnostic timelines in the US.
10.1212/WNL.0000000000205100