Critical review of complementary and alternative medicine use in amyotrophic lateral sclerosis: Prevalence and users' profile, decision-making, information seeking, and disclosure in the face of a lack of efficacy

Adams, J; Lee, M; Peng, W

Critical review of complementary and alternative medicine use in amyotrophic lateral sclerosis: Prevalence and users' profile, decision-making, information seeking, and disclosure in the face of a lack of efficacy

Adams, J

Lee, M

Peng, W

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Publication Type:: Journal Article
Citation:: Neurodegenerative Diseases, 2018, 18 (4), pp. 225 - 232
Issue Date:: 2018-10-01

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Field	Value	Language
dc.contributor.author	Adams, J https://orcid.org/0000-0002-9901-5717	en_US
dc.contributor.author	Lee, M https://orcid.org/0000-0001-8872-9901	en_US
dc.contributor.author	Peng, W https://orcid.org/0000-0001-9747-2466	en_US
dc.date.available	2018-08-15	en_US
dc.date.issued	2018-10-01	en_US
dc.identifier.citation	Neurodegenerative Diseases, 2018, 18 (4), pp. 225 - 232	en_US
dc.identifier.issn	1660-2854	en_US
dc.identifier.uri	http://hdl.handle.net/10453/128275
dc.description.abstract	© 2018 S. Karger AG, Basel. Background: Despite a lack of evidence of clinical efficacy for complementary and alternative medicine (CAM) use in amyotrophic lateral sclerosis (ALS), these medicines remain popular around the world. Objective: To examine the prevalence and cost of CAM use in ALS and CAM users' profile, decision-making, information seeking, and disclosure among ALS patients. Methods: A comprehensive literature search was conducted of MEDLINE, CINAHL/SCOPUS, and AMED databases from their inception to April 2018. This review followed PRISMA guidelines and employed a quality scoring system to assess the included papers. Results: Seven papers met the inclusion criteria and were thematically analysed. ALS patients utilized a range of CAM therapies and/or products, with acupuncture and vitamins being the most frequently reported. CAM modalities were often employed concurrently with conventional medications throughout the disease process. Although some ALS patients reported positive experience regarding CAM use, many were reluctant to disclose their CAM use to their clinicians. Research focusing on CAM use in ALS remains ad hoc and restricted to only a few countries. The rigour and quality of this research field to date has been varied, predominantly drawing upon regional/localized data and failing to report CAM users' characteristics. Conclusion: A proportion of ALS patients report utilizing CAM concurrently with conventional treatments. Such use, set amidst a dearth of evidence for the efficacy of CAM in ALS, poses potential direct and indirect risks to patient care, and medical providers should be mindful of and enquire about CAM use when treating ALS patients.	en_US
dc.relation.ispartof	Neurodegenerative Diseases	en_US
dc.relation.isbasedon	10.1159/000492946	en_US
dc.subject.classification	Neurology & Neurosurgery	en_US
dc.subject.mesh	Humans	en_US
dc.subject.mesh	Amyotrophic Lateral Sclerosis	en_US
dc.subject.mesh	Complementary Therapies	en_US
dc.subject.mesh	Prevalence	en_US
dc.subject.mesh	Disclosure	en_US
dc.subject.mesh	Decision Making	en_US
dc.subject.mesh	Information Seeking Behavior	en_US
dc.title	Critical review of complementary and alternative medicine use in amyotrophic lateral sclerosis: Prevalence and users' profile, decision-making, information seeking, and disclosure in the face of a lack of efficacy	en_US
dc.type	Journal Article
utslib.citation.volume	4	en_US
utslib.citation.volume	18	en_US
utslib.for	1104 Complementary and Alternative Medicine	en_US
utslib.for	1702 Cognitive Sciences	en_US
utslib.for	1103 Clinical Sciences	en_US
utslib.for	1109 Neurosciences	en_US
pubs.embargo.period	Not known	en_US
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Engineering and Information Technology
pubs.organisational-group	/University of Technology Sydney/Faculty of Engineering and Information Technology/School of Biomedical Engineering
pubs.organisational-group	/University of Technology Sydney/Faculty of Health
pubs.organisational-group	/University of Technology Sydney/Strength - CHSP - Health Services and Practice
pubs.organisational-group	/University of Technology Sydney/Strength - CHT - Health Technologies
utslib.copyright.status	closed_access
pubs.issue	4	en_US
pubs.publication-status	Published	en_US
pubs.volume	18	en_US

Abstract:

© 2018 S. Karger AG, Basel. Background: Despite a lack of evidence of clinical efficacy for complementary and alternative medicine (CAM) use in amyotrophic lateral sclerosis (ALS), these medicines remain popular around the world. Objective: To examine the prevalence and cost of CAM use in ALS and CAM users' profile, decision-making, information seeking, and disclosure among ALS patients. Methods: A comprehensive literature search was conducted of MEDLINE, CINAHL/SCOPUS, and AMED databases from their inception to April 2018. This review followed PRISMA guidelines and employed a quality scoring system to assess the included papers. Results: Seven papers met the inclusion criteria and were thematically analysed. ALS patients utilized a range of CAM therapies and/or products, with acupuncture and vitamins being the most frequently reported. CAM modalities were often employed concurrently with conventional medications throughout the disease process. Although some ALS patients reported positive experience regarding CAM use, many were reluctant to disclose their CAM use to their clinicians. Research focusing on CAM use in ALS remains ad hoc and restricted to only a few countries. The rigour and quality of this research field to date has been varied, predominantly drawing upon regional/localized data and failing to report CAM users' characteristics. Conclusion: A proportion of ALS patients report utilizing CAM concurrently with conventional treatments. Such use, set amidst a dearth of evidence for the efficacy of CAM in ALS, poses potential direct and indirect risks to patient care, and medical providers should be mindful of and enquire about CAM use when treating ALS patients.

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http://hdl.handle.net/10453/128275