Ethical Perspectives on Treatment Options with Spinal Muscular Atrophy Patients

Since 2016, 3 innovative therapies for spinal muscular atrophy (SMA) have changed the face of the disease. Although these therapies often result in remarkable improvements in infants and children, benefits in adults are modest and treatment is not curative. Concerns have been raised about the enormo...

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Autores principales: Yeo, Crystal J. J., Simmons, Zachary, De Vivo, Darryl C., Darras, Basil T.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley & Sons, Inc. 2022
Materias:
Neurology Grand Rounds
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9305104/
https://www.ncbi.nlm.nih.gov/pubmed/34981567
http://dx.doi.org/10.1002/ana.26299
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author Yeo, Crystal J. J.
Simmons, Zachary
De Vivo, Darryl C.
Darras, Basil T.
author_facet Yeo, Crystal J. J.
Simmons, Zachary
De Vivo, Darryl C.
Darras, Basil T.
author_sort Yeo, Crystal J. J.
collection PubMed
description Since 2016, 3 innovative therapies for spinal muscular atrophy (SMA) have changed the face of the disease. Although these therapies often result in remarkable improvements in infants and children, benefits in adults are modest and treatment is not curative. Concerns have been raised about the enormous costs of these medications, the ultimate burden to taxpayers, and the costs to society of withholding treatments and sacrificing or disadvantaging some individuals. Physicians are best positioned to serve our patients by carefully considering the costs, benefits, implications for quality of life (QOL), and the interplay of these factors within the framework of core ethical principles that guide clinical care. ANN NEUROL 2022;91:305–316
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spelling pubmed-93051042022-07-28 Ethical Perspectives on Treatment Options with Spinal Muscular Atrophy Patients Yeo, Crystal J. J. Simmons, Zachary De Vivo, Darryl C. Darras, Basil T. Ann Neurol Neurology Grand Rounds Since 2016, 3 innovative therapies for spinal muscular atrophy (SMA) have changed the face of the disease. Although these therapies often result in remarkable improvements in infants and children, benefits in adults are modest and treatment is not curative. Concerns have been raised about the enormous costs of these medications, the ultimate burden to taxpayers, and the costs to society of withholding treatments and sacrificing or disadvantaging some individuals. Physicians are best positioned to serve our patients by carefully considering the costs, benefits, implications for quality of life (QOL), and the interplay of these factors within the framework of core ethical principles that guide clinical care. ANN NEUROL 2022;91:305–316 John Wiley & Sons, Inc. 2022-01-25 2022-03 /pmc/articles/PMC9305104/ /pubmed/34981567 http://dx.doi.org/10.1002/ana.26299 Text en © 2022 The Authors. Annals of Neurology published by Wiley Periodicals LLC on behalf of American Neurological Association. https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc-nd/4.0/ (https://creativecommons.org/licenses/by-nc-nd/4.0/) License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made.
spellingShingle Neurology Grand Rounds
Yeo, Crystal J. J.
Simmons, Zachary
De Vivo, Darryl C.
Darras, Basil T.
Ethical Perspectives on Treatment Options with Spinal Muscular Atrophy Patients
title Ethical Perspectives on Treatment Options with Spinal Muscular Atrophy Patients
title_full Ethical Perspectives on Treatment Options with Spinal Muscular Atrophy Patients
title_fullStr Ethical Perspectives on Treatment Options with Spinal Muscular Atrophy Patients
title_full_unstemmed Ethical Perspectives on Treatment Options with Spinal Muscular Atrophy Patients
title_short Ethical Perspectives on Treatment Options with Spinal Muscular Atrophy Patients
title_sort ethical perspectives on treatment options with spinal muscular atrophy patients
topic Neurology Grand Rounds
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9305104/
https://www.ncbi.nlm.nih.gov/pubmed/34981567
http://dx.doi.org/10.1002/ana.26299
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