PND125 REAL-WORLD HEALTHCARE UTILIZATION, COSTS, AND PROGRESSION MILESTONE PATTERNS AMONG FFS MEDICARE PATIENTS NEWLY DIAGNOSED WITH AMYOTROPHIC LATERAL SCLEROSIS (ALS)

Abstract

To study healthcare resource utilization (HRU) and costs among new ALS patients compared to matched controls, and estimate time and costs to progression milestones through end-of-life among ALS patients. Using the CMS’ Limited Data Set, we conducted a retrospective study of age-eligible enrollees with an incident ALS diagnosis between 2010 and 2018 with at least six months of pre-diagnosis data. Time and costs to milestones were tabulated for ALS patients using Kaplan-Meier Sample Average method. Milestones (M) were defined according to the Healthcare Common Procedure Coding System and categorized as the use of: canes/walkers/wheelchairs (M1); artificial nutrition (M2); non-invasive/invasive ventilation (M3); speech generating devices (M4); hospice (M5); death (M6). We estimated HRU and costs (adjusted to 2019 USD$) for patients with at least one-year of available post-diagnosis data and compared to matched controls. Of 1,687 ALS patients, 344 (20.4%) did not have a claim for a progression milestone. Average months and costs from ALS diagnosis to milestones were: M1: 9.4 ($46,576); M2: 9.6 ($58,767); M3: 7.5 ($47,793); M4: 11.2 ($47,707); M5: 14.1 ($70,544); M6: 14.8 ($78,764). Among patients with at least 12 months of post-diagnosis data available (n=956), average all-cause costs were $34,475 among ALS patients compared to $32,165 among controls (P<0.01). Average outpatient costs were $13,913 (40% of total costs) among ALS patients. ALS patients were more likely to have a physician office visit (96.5% vs. 91%), an outpatient hospital visit (91.3% vs. 80.1%), and at least one durable medical equipment claim (65.4% vs. 52.4%) (all P<0.01). This retrospective analysis seems to show that ALS patients’ Medicare expenditures post-diagnosis through end-of-life totaled $78,764, and survival averaged 15 months. While costs among ALS patients are higher compared to non-ALS patients in the year following diagnosis, further research is needed to quantify total economic and societal burden.