The preferences of people with amyotrophic lateral sclerosis on riluzole treatment in Europe
Abstract 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) trea...
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| Format: | Article |
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Nature Portfolio
2023-12-01
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| Series: | Scientific Reports |
| Online Access: | https://doi.org/10.1038/s41598-023-49424-3 |
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| author | Albert C. Ludolph Harish Grandjean Evy Reviers Valentina De Micheli Cosetta Bianchi Leonardo Cardosi Hermann Russ Vincenzo Silani |
| author_facet | Albert C. Ludolph Harish Grandjean Evy Reviers Valentina De Micheli Cosetta Bianchi Leonardo Cardosi Hermann Russ Vincenzo Silani |
| author_sort | Albert C. Ludolph |
| collection | DOAJ |
| description | Abstract 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 46% of respondents postponed or missed the treatment due to swallowing difficulties and need of caregiver assistance. Overall, 51% of tablet and 50% of oral suspension users regularly crushed or manipulated riluzole, 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. |
| format | Article |
| id | doaj-art-d407cf84b7ea4996be304164d51c6ea4 |
| institution | OA Journals |
| issn | 2045-2322 |
| language | English |
| publishDate | 2023-12-01 |
| publisher | Nature Portfolio |
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| series | Scientific Reports |
| spelling | doaj-art-d407cf84b7ea4996be304164d51c6ea42025-08-20T01:47:29ZengNature PortfolioScientific Reports2045-23222023-12-011311910.1038/s41598-023-49424-3The preferences of people with amyotrophic lateral sclerosis on riluzole treatment in EuropeAlbert C. Ludolph0Harish Grandjean1Evy Reviers2Valentina De Micheli3Cosetta Bianchi4Leonardo Cardosi5Hermann Russ6Vincenzo Silani7Department of Neurology, German Center for Neurodegenerative Diseases (DZNE), University of UlmCharles River Associates InternationalEuropean Organization for Professionals and Patients with ALS (EUpALS)Business Integration Partners S.p.ABusiness Integration Partners S.p.AZambon Biotech SPASirius Scientific Consulting AGDepartment of Neuroscience and Laboratory of Neuroscience, IRCCS Istituto Auxologico ItalianoAbstract 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 46% of respondents postponed or missed the treatment due to swallowing difficulties and need of caregiver assistance. Overall, 51% of tablet and 50% of oral suspension users regularly crushed or manipulated riluzole, 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.https://doi.org/10.1038/s41598-023-49424-3 |
| spellingShingle | Albert C. Ludolph Harish Grandjean Evy Reviers Valentina De Micheli Cosetta Bianchi Leonardo Cardosi Hermann Russ Vincenzo Silani The preferences of people with amyotrophic lateral sclerosis on riluzole treatment in Europe Scientific Reports |
| title | The preferences of people with amyotrophic lateral sclerosis on riluzole treatment in Europe |
| title_full | The preferences of people with amyotrophic lateral sclerosis on riluzole treatment in Europe |
| title_fullStr | The preferences of people with amyotrophic lateral sclerosis on riluzole treatment in Europe |
| title_full_unstemmed | The preferences of people with amyotrophic lateral sclerosis on riluzole treatment in Europe |
| title_short | The preferences of people with amyotrophic lateral sclerosis on riluzole treatment in Europe |
| title_sort | preferences of people with amyotrophic lateral sclerosis on riluzole treatment in europe |
| url | https://doi.org/10.1038/s41598-023-49424-3 |
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