(82) Impact of Specialty Referral Timing on Treatment Start and Cost Outcomes in Amyotrophic lateral sclerosis (ALS): A Real-World Claims Analysis

Background: : Amyotrophic lateral sclerosis (ALS) is a rapidly progressive neurodegenerative condition where early access to neurologic care and treatment can potentially modify disease trajectory and healthcare utilization. However, real-world evidence assessing the role of referral timing on treatment initiation and downstream clinical and economic outcomes remains limited.

Objective: : To evaluate the association between timing of specialty neurology referrals and symptoms management, treatment initiation, and downstream healthcare utilization and costs.

Methods: : We conducted a retrospective analysis utilizing anonymized claims data covering both medical and pharmacy benefits and the period from Jan-2017 to Apr-2025. Adults diagnosed with ALS (ICD-10 G12.21) between 2021–2023. Patients with any missing relevant data were excluded. We tracked two phases of the patient journey: (1) symptom onset to ALS diagnosis and (2) diagnosis to treatment initiation. Referral timing was defined as the interval between onset of symptoms and first neurology visit. Patients were categorized as having timely (≤90 days), moderate (91–180 days), or delayed (180+ days) referrals. Outcomes included use of disease-modifying therapies, hospitalizations, emergency department visits, and total healthcare costs within 6- and 12-months post-diagnosis.

Results: : Among 8,294 ALS patients eligible for our analysis identified, 60% received a neurology referral within first 6 months of symptoms onset (45% within 90 days and 15% between 90-180 days), while 40% had referrals delayed beyond 6 months. Median time from onset of symptoms to neurologist visit was 118 days. ALS-specific medication initiation was faster in the early referral group (≤90 days) with a median of 173 days for therapy initiation, while it was 198 days for moderate referrals (90-180 days) compared to 474 days in the delayed referral group (180 days+). Additional, analysis to be explored, if timely referral was associated with lower total healthcare costs over 12 months post-diagnosis compared to delayed referrals.

Conclusions: : Timely specialty referral following ALS symptom onset is associated with earlier treatment initiation, better alignment with clinical guidelines. Interventions to streamline referral pathways in ALS care could enhance patient outcomes. This analysis underscores the value of real-world data in optimizing care transitions in rare, high-cost neurological conditions.

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