Patient Profile and Direct Economic Burden of Amyotrophic Lateral Sclerosis (ALS) in a Medicare Population


Real World Data - Disease registries, natural history, post marketing surveillance

Poster Number: 162


Jennifer Millard, MBA , Terry Heiman-Patterson, MD, Sajjad Raza, Emily Boller, Elise Bauer, Stephen Apple, MD


1. Precision Xtract, New York, NY, USA, 2. Temple University Lewis Katz School of Medicine, Philadelphia, PA, USA, 3. Precision Xtract, Boston, MA, USA, 4. Precision Xtract, New York, NY, USA, 5. Precision Xtract, Boston, MA, USA, 6. Mitsubishi Tanabe Pharma America, Inc., Jersey City, NJ, USA

BACKGROUND: Little information is available describing the profile and long-term economic burden among ALS patients in recent years.

OBJECTIVES: To describe ALS patient profiles and quantify post-diagnosis healthcare resource utilization (HRU) and cost. Using the Centers for Medicare and Medicaid Services' Limited Data Set, we conducted a retrospective study on age-eligible enrollees with at least 1 incident ALS diagnosis between 2010 and 2018 and at least 6 months of pre-diagnosis and 1 year of post-diagnosis data. Baseline characteristics, HRU, and costs were assessed descriptively. Costs are adjusted to 2019 USD.

RESULTS: Among 956 patients, median age was 74 (mean: 75.1); 51.5% were male. Muscle weakness (38.5%), gait abnormality (29.1%), limb pain (25.5%), and speech and language deficits (25.5%) were most common ALS-related symptoms observed pre-diagnosis. At 1, 2, 3, 4, and 5 years after diagnosis, mean annualized costs were $34,475, $28,281, $20,896, $18,926, and $19,024, respectively. The costs for physician office visits at 1, 2, 3, 4, and 5 years were $10,266, $9,027, $8,030, $6,043, and $7,269, respectively. At 1, 2, 3, 4 and 5 years, percent of patients with 1+ hospital admissions was 37%, 29%, 25%, 23% and 26%, respectively; percent of patients with 1+ outpatient office visits was 97%, 94%, 93%, 91% and 96%, respectively; percent of patients with 1+ durable medical equipment use was 65%, 56%, 46%, 44% and 50%, respectively; and percent of patients with 1+ home healthcare visits was 38%, 25%, 21%, 20% and 21%, respectively.

CONCLUSIONS: Direct healthcare costs among incident Medicare ALS patients are highest the year of diagnosis. Outpatient visits are a substantial portion of ALS patients’ HRU and costs. This analysis seems to show a high direct burden among incident Medicare patients, but further research should extend to prevalent ALS patients and include indirect and out-of-pocket costs, to quantify economic burden.