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

Abstract

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.

Complementary and Alternative Medicine Use in Amyotrophic Lateral Sclerosis Cases in South Korea

“…Regarding consultation, 25% of the patients did not consult with anyone about CAM, with many of those patients stating that there was “no need to consult with healthcare providers” (51.2%). These results coincide with a previous study indicating that ALS patients have significant levels of nondisclosure to clinicians regarding their CAM use [3]. This may reflect a desire to avoid conflict or embarrassment; also, the response and attitude of the healthcare providers towards CAM may play a significant role in ALS patient decision-making concerning CAM use [6].…”

“…More specifically, patients with amyotrophic lateral sclerosis (ALS) consider CAM because of the lack of effective conventional drugs [3, 4]. They use CAM with vague hopes and beliefs of improvement, despite knowing that it is considered an unorthodox method with no definite evidence of efficacy [5, 6].…”

“…In Shanghai, China, a higher number of ALS patients (99%) reported the use of at least 1 CAM treatment [9]. However, there are few studies focusing on the utilization of CAM in ALS cases [3], and there have been no published attempts to investigate the prevalence of CAM in South Korea. Therefore, this study investigated CAM use in patients with ALS in South Korea to determine the prevalence, motives, information sources, adverse effects, and cost of CAM.…”

Amyotrophic lateral sclerosis and intestinal microbiota—toward establishing cause and effect

“…At earlier stages of the disease, many patients with ALS choose to take a variety of food supplements, vitamins, and minerals, despite lack of evidence of efficacy. 43,44 Some of these may also impact the microbiome. Given the plethora of substances that people with ALS ingest in the absence of medical advice, it will be challenging to untangle this subject.…”

A Survey On patients’ Disease Perception and the Impact of the COVID-19 Pandemic On Persons Living With Amyotrophic Lateral Sclerosis in Malaysia

“…The lack of formal supportive care resources in Southeast Asian countries, including Malaysia, often place the responsibility of care on spouses, family members or hired help, who may not fully understand the disease trajectory or best care practices. In addition, cultural advice and marketing strategies regarding use of complementary and alternative medicine (CAM) may complicate their decision making and use of these CAMs may interfere with evidence-based treatment [5]. ALS patients consider the use of at least one type of CAM as an alternative treatment as there is no medically proven therapy to improve their condition.…”