The preferences of people with amyotrophic lateral sclerosis on riluzole treatment in Europe

The Patient Preference Survey aims to understand unmet needs related to riluzole management in people with Amyotrophic Lateral Sclerosis (ALS) and to identify which characteristics of a new formulation could better match their preferences. The survey involved 117 people with ALS (PALS) treated with...

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Bibliographic Details
Published in:Scientific reports 2023-12, Vol.13 (1), p.22497-22497, Article 22497
Main Authors: Ludolph, Albert C., Grandjean, Harish, Reviers, Evy, De Micheli, Valentina, Bianchi, Cosetta, Cardosi, Leonardo, Russ, Hermann, Silani, Vincenzo
Format: Article
Language:English
Subjects:
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Airway Obstruction
Amyotrophic lateral sclerosis
Amyotrophic Lateral Sclerosis - drug therapy
Beverages
Europe
Humanities and Social Sciences
Humans
multidisciplinary
Neuroprotective Agents
Polls & surveys
Preferences
Riluzole - therapeutic use
Science
Science (multidisciplinary)
Self-administration
Surveys
Suspensions
Tablets
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Summary:The Patient Preference Survey aims to understand unmet needs related to riluzole management in people with Amyotrophic Lateral Sclerosis (ALS) and to identify which characteristics of a new formulation could better match their preferences. The survey involved 117 people with ALS (PALS) treated with riluzole in four European countries. The dysphagic PALS were least satisfied with the riluzole tablet and oral suspension and with ease in self-administration; up to 68% of respondents postponed or missed the treatment due to swallowing difficulties and need of caregiver assistance. Overall, 51% of tablet and 53% of oral suspension users regularly crushed or mixed riluzole with beverages, respectively; PALS who always manipulated riluzole showed low satisfaction with the formulation and considered the risk of choking and pneumonia the most worrisome event. The survey evaluated the driving factors in choosing/switching the therapy: 67% of PALS declared a low risk of choking. The research finally evaluated which attributes of a new formulation would be preferred: the most relevant were ease of use (4.3/5), convenient/portable packaging (4.0/5) and oral-dissolving properties without tongue motility (3.9/5). The Patient Preference Survey suggests that patients have several unmet needs and preferences that could be addressed by a different formulation, e.g. using oral film technologies.
ISSN:2045-2322
2045-2322
DOI:10.1038/s41598-023-49424-3