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P.065 Understanding treatment barriers and adherence among people living with amyotrophic lateral sclerosis

Published online by Cambridge University Press:  24 May 2024

G Matte
Affiliation:
(Montreal)*
D Blackburn
Affiliation:
(Saskatoon)
D Bolano Del Vecchio
Affiliation:
(Montreal)
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Abstract

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Background: Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease with only four approved treatments in North America - sodium phenylbutyrate (PB) and ursodoxicoltaurine (TURSO, also known as taurursodiol), riluzole, edaravone, and tofersen. Poor treatment adherence reduces clinical effectiveness which can adversely impact disease progression and mortality rates. Understanding barriers and adherence to treatment in clinical practice is essential to address these issues. Methods: A scoping review was conducted in PubMed, Medline, Embase, and Web of Science. Retained studies were, (1) published in English, (2) included adults with ALS, (3) explored treatment non-adherence and/or identified barriers associated with non-adherence in ALS in real world clinical practice, (4) focused on ≥1 of the four approved ALS medications, and (5) used a measurement of adherence. Observational studies, real-world data, and case reports were included. Quality assessment was performed. Results: The review illustrated several knowledge gaps, including limited data on the incidence of non-adherence to ALS treatment in clinical practice, a lack of understanding regarding barriers to treatment adherence in ALS, and an absence of studies outside of western societies. Conclusions: We demonstrate a dearth of real-world data on treatment adherence in ALS and highlight opportunities for advancing research into this important area.

Type
Abstracts
Copyright
© The Author(s), 2024. Published by Cambridge University Press on behalf of Canadian Neurological Sciences Federation