THE SOCIO-ECONOMIC BURDEN OF AMYOTROPHIC LATERAL SCLEROSIS (ALS) IN ITALY: RESULTS FROM A REAL-WORLD SURVEY
Author(s)
Paolo Angelo Cortesi, PhD1, Ippazio Cosimo Antonazzo, PhD2, Lorenzo G Mantovani, ScD3, Eugenia Guerrieri, MSc4, Gregorio Molinari, MD5, Katie Stenson, MSc6, Jack Wright, MSc7, Laura Santoni, Sr., MSc, PharmD8, Gabriella Paparella, MD9, Federica Cerri, MD10, Nicola Ticozzi, MD11.
1Laboratory of Public Health, IRCCS Istituto Auxologico Italiano, Milan, Italy & Research Centre on Public Health (CESP), University of Milan-Bicocca, Monza, Italy, 2Department of Environmental and Prevention Sciences, University of Ferrara, Ferrara, Italy, 3Laboratory of Public Health, IRCCS Istituto Auxologico Italiano, Milan, Italy & Research Centre on Public Health (CESP), University of Milano-Bicocca, Monza, Italy, 4Biogen, Milano, Italy, 5Biogen Italia, Milan, Italy, 6Biogen, Weymouth, MA, USA, 7Adelphi Real World, London, United Kingdom, 8Biogen Italia, Milano, Italy, 9Scientific Institute IRCCS E. Medea, Conegliano, Italy, 10Neuromuscular Omnicentre (NEMO), Fondazione Serena ETS (No Onlus), Milan, Italy, 11Department of Neurology, IRCCS Istituto Auxologico Italiano, Milano, Italy & Department of Pathophysiology and Transplantation, Università degli Studi di Milano, Milan, Italy.
1Laboratory of Public Health, IRCCS Istituto Auxologico Italiano, Milan, Italy & Research Centre on Public Health (CESP), University of Milan-Bicocca, Monza, Italy, 2Department of Environmental and Prevention Sciences, University of Ferrara, Ferrara, Italy, 3Laboratory of Public Health, IRCCS Istituto Auxologico Italiano, Milan, Italy & Research Centre on Public Health (CESP), University of Milano-Bicocca, Monza, Italy, 4Biogen, Milano, Italy, 5Biogen Italia, Milan, Italy, 6Biogen, Weymouth, MA, USA, 7Adelphi Real World, London, United Kingdom, 8Biogen Italia, Milano, Italy, 9Scientific Institute IRCCS E. Medea, Conegliano, Italy, 10Neuromuscular Omnicentre (NEMO), Fondazione Serena ETS (No Onlus), Milan, Italy, 11Department of Neurology, IRCCS Istituto Auxologico Italiano, Milano, Italy & Department of Pathophysiology and Transplantation, Università degli Studi di Milano, Milan, Italy.
OBJECTIVES: ALS is the most common motor neuron disease, characterized by progressive paralytic neurodegeneration affecting upper and lower motor neurons. The aim of this analysis was to assess the socio-economic burden associated with ALS in Italy and define its variation according to disease stage, as classified by the Milan-Torino-Staging-system (MiToS).
METHODS: The analysis is based on secondary data from Adelphi Real World ALS Disease Specific Programme™, a cross-sectional survey of neurologists, patients (pALS), and caregivers (cALS) conducted in Italy between July and October 2020, collecting data on pALS demographics, Healthcare-Resource-Utilization (HCRU), and employment changes for pALS and cALS. In 2024, collected data were reviewed and evaluated by an Italian expert panel comprising two neurologists and one physiatrist. Descriptive analyses are performed from Italian-National-Healthcare-Service (NHS) and societal perspectives, costs updated to 2024 EUR, results presented by MiToS severity level as cost per-patient-year (PPY).
RESULTS: Data were collected for 129 Italian pALS: 64.3% MiToS stage 0, 10.1% stage 1, 7.0% stage 2, 5.4% stage 3, 13.2% stage 4. Estimated HCRU increased alongside MiToS progression. At stage 0, pALS reported a mean direct cost of €1,758 PPY, ranging to €29,356 at stage 4. Similar trend for pALS indirect costs, €2,990 PPY at stage 0 and €11,718 at stage 4. Conversely, cALS indirect costs peaked at stage 3 (€11,638 PPY) and not stage 4 (€9,385 PPY). Total annual socio-economic burden ranged from €7,831 at MiToS stage 0 to €50,459 at stage 4. Furthermore, pALS reported significant one-off costs associated with disease progression, primarily driven by the acquisition of aids for mobility.
CONCLUSIONS: This analysis demonstrates a substantial socio-economic burden associated with ALS, with both direct and indirect costs increasing significantly as disease severity progresses. Reducing the speed of clinical decline is essential to improve patient outcomes and to mitigate the economic impact on NHS and society.
METHODS: The analysis is based on secondary data from Adelphi Real World ALS Disease Specific Programme™, a cross-sectional survey of neurologists, patients (pALS), and caregivers (cALS) conducted in Italy between July and October 2020, collecting data on pALS demographics, Healthcare-Resource-Utilization (HCRU), and employment changes for pALS and cALS. In 2024, collected data were reviewed and evaluated by an Italian expert panel comprising two neurologists and one physiatrist. Descriptive analyses are performed from Italian-National-Healthcare-Service (NHS) and societal perspectives, costs updated to 2024 EUR, results presented by MiToS severity level as cost per-patient-year (PPY).
RESULTS: Data were collected for 129 Italian pALS: 64.3% MiToS stage 0, 10.1% stage 1, 7.0% stage 2, 5.4% stage 3, 13.2% stage 4. Estimated HCRU increased alongside MiToS progression. At stage 0, pALS reported a mean direct cost of €1,758 PPY, ranging to €29,356 at stage 4. Similar trend for pALS indirect costs, €2,990 PPY at stage 0 and €11,718 at stage 4. Conversely, cALS indirect costs peaked at stage 3 (€11,638 PPY) and not stage 4 (€9,385 PPY). Total annual socio-economic burden ranged from €7,831 at MiToS stage 0 to €50,459 at stage 4. Furthermore, pALS reported significant one-off costs associated with disease progression, primarily driven by the acquisition of aids for mobility.
CONCLUSIONS: This analysis demonstrates a substantial socio-economic burden associated with ALS, with both direct and indirect costs increasing significantly as disease severity progresses. Reducing the speed of clinical decline is essential to improve patient outcomes and to mitigate the economic impact on NHS and society.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
EE202
Topic
Economic Evaluation, Health Service Delivery & Process of Care
Topic Subcategory
Cost/Cost of Illness/Resource Use Studies
Disease
Neurological Disorders