Healthcare Resource Utilization (Hcru) For Early-, Middle- And Late-Stage Amyotrophic Lateral Sclerosis (Als) Patients: Results From A Real-World Point-In-Time Survey

ALS is a rare, degenerative neuromuscular disease, leading to loss of motor control, speech and swallowing difficulties, respiratory insufficiency, and ultimately death. Advancing disease stage is associated with greater burden on the healthcare system and requirement for assistive devices. We assessed healthcare resource utilization (HCRU) in early-, middle- and late-stage ALS patients. Data were drawn from the Adelphi ALS Disease Specific Programme™, a point-in-time survey of neurologists and their ALS patients in France, Germany, Italy, Spain, the UK and the USA. Data were collected between July–October 2020. Neurologists reported patient demographics, HCRU including consultations with healthcare professionals (HCPs), ALS-related hospitalizations, use of mobility, ventilatory or feeding interventions, and overall caregiver requirement. Neurologists identified whether patients were in the early, middle, or late stage of ALS. Comparisons among the three disease stages were conducted using analysis of variance and chi-squared tests. 62 neurologists recorded data on 399 ALS patients (France=60; Germany=77, Italy=46; Spain=124; UK=19, USA=73), of whom 33%, 47% and 20% of patients were considered as having early-, middle- and late-stage ALS, respectively. Significant differences were observed among disease stages (all P<0.0001): Patients at later stages were older (58.1, 62.0, 66.6 years), had longer time since diagnosis (11.4, 20.6, 27.6 months), had more HCP consultations (12.5, 16.3, 23.1) and ALS-related hospitalizations (0.2, 0.4, 1.0) in the last 12 months. Later stage patients more frequently required mobility aids (36%, 81%, 81%), ventilation devices (3%, 34%, 76%), feeding tubes (2%, 10%, 71%) and caregiver assistance (45%, 88%, 100%), and necessitated increased professional caregiver hours/week (15.9, 17.2, 45.0). Later-stage ALS was associated with higher patient HCRU compared to earlier stages. These findings highlight the potential value of identifying individuals with early-stage ALS and preventing progression into a more resource-intensive stage. Data collection is ongoing, with a larger dataset expected in early 2021.