Amyotrophic Lateral Sclerosis Patients’ Preferences on Riluzole Treatment in Europe

Abstract

Abstract The Patient Preference Study aims to understand unmet needs related to riluzole management in patients with Amyotrophic Lateral Sclerosis (ALS) and which characteristics of a newly formulated product could better match their preferences. The survey involved 117 patients treated with riluzole, in four European countries. The dysphagic patients were least satisfied with both riluzole tablet and oral suspension and with ease in self-administration; up to 61% of respondents postponed or missed the treatment, due to swallowing difficulties and need for assistance. Overall, 56% of tablet and 53% of oral suspension users regularly crushed or mix riluzole with beverages, respectively; patients that always manipulate riluzole showed low patient satisfaction with the formulation and considered the risk of choking and pneumonia the most worrisome events. The study evaluated the driver factors in choosing/switching the therapy: 97% of ALS patients declared a low risk of choking. The study finally evaluated the level of preference of attributes of a new product: the most relevant were ease in use (4.3/5), convenient/portable packaging (4.0/5) and oral-dissolving properties without tongue motility (3.9/5). The Patient Preference Study suggests that patients have several unmet needs and preferences that could be addressed by new products, e.g. oral film technologies.