OBJECTIVES : 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.

METHODS : 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.

RESULTS : 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).

CONCLUSIONS : 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.