OBJECTIVES: Amyotrophic lateral sclerosis (ALS) is a rare, neurodegenerative disease, leading to progressive loss of muscle function, and ultimately death. We assessed HCRU and impacts on QoL and employment in Italian pALS and their caregivers (cALS).

METHODS: Data were drawn from the Adelphi ALS Disease Specific Programme™, a cross-sectional survey of neurologists, pALS and cALS. Data collection in Italy took place between July–October 2020. Neurologists reported demographics of pALS, HCRU including consultations with healthcare professionals (HCPs), ALS-related hospitalizations, use of mobility, ventilatory or feeding interventions, and overall professional caregiver requirements. Neurologists designated whether patients were in the early, middle, or late stage of ALS based on their clinical judgement. These same pALS and cALS reported on employment changes and their QoL.

RESULTS: 21 neurologists recorded data on 129 Italian pALS (50, 45 and 34 designated as early-, middle- and late-stage ALS, respectively). Self-reported data was provided by 22 pALS (10, 9, 3) and 12 cALS (2, 5, 5). Early, middle, and late-stage pALS had a mean 7.1, 10.7, 36.3 HCP consultations, and 0.3, 0.3, 0.6 ALS-related hospitalisations in the previous 12 months. pALS at different stages frequently required mobility aids (44%, 64%, 82%), respiratory aids (0%, 27%, 79%), feeding tubes (2%, 4%, 76%), and professional caregiver support (8%, 18%, 59%; 10.0, 15.6, 63.2 hours/week). Later stage pALS rarely remained in employment (36%, 22%, 0%), and cALS frequently had to change their own working arrangements (0%, 40%, 60%). EQ-5D-5L outcomes were captured for both pALS (0.76, 0.66, -0.05), and cALS (1.00, 0.83, 0.72) at the different stages.

CONCLUSIONS: Later-stage ALS appeared to be associated with greater HCRU and impact on pALS and cALS than earlier stages. These findings highlight the potential value of early diagnosis in ALS to prevent disease progression into a more resource-intensive stage.