ALS Patients Commonly Use Complementary and Alternative Medicines, Review Study Reports

Despite a lack of clinical evidence, complementary and alternative medicines (CAM) are often used by patients with amyotrophic lateral sclerosis (ALS), sometimes in combination with conventional medications, according to a review study.

With scarce evidence on the safety and effectiveness of CAM in ALS and the possible risks they pose, healthcare providers should be aware of these medicines and discuss their use with ALS patients, the study suggests.

The study, “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,” appeared in the journal Neurodegenerative Diseases.

CAM is often used by patients with neurodegenerative diseases, including those with ALS, to relieve symptoms and improve quality of life. However, only one study has focused on the clinical efficacy of CAM specifically in ALS, reporting that the effects of most CAM options in these patients are largely unproven, and that strategies such as dietary supplements, chelation therapy — to remove heavy metals and minerals from the body — and acupuncture have conflicting evidence as to their benefits.

Evaluations of the prevalence and cost of CAM in ALS, as well as assessments of the profile, decision-making, and information-seeking of ALS patients who use CAM, are lacking. Aiming to address this gap for safer and more effective care, the scientists at the University of Technology Sydney in Australia conducted a literature review using three online databases.

A total of seven studies met the inclusion criteria, with only two reporting the overall prevalence of CAM in ALS patients. A 2001 German study showed that 54% of 171 ALS patients who were members of the German Association for Neuromuscular Disease used CAM. A 2012-2013 study in China reported a higher rate — 99% of the 229 respondents had used at least one CAM. These results are in line with prior reports in multiple sclerosis patients, the investigators noted.

Some of the most common CAM types used by ALS patients were acupuncture, used by 2% to 51% (mean 26%) of ALS patients; vitamins, used by 15% to 91% (mean 54%); Chinese medicine, used by 11% to 95% (mean 52%); massage therapy, used by 4% to 57% (mean 23%); and dietary/herbal supplements, used by 16% to 42% (mean 26%). The prevalence of vitamin E and coenzyme Q10 was particularly high in four studies.

Two studies reported that ALS patients likely used multiple CAM therapies, while three studies in Germany showed that CAM was used along with ALS medication riluzole (marketed as Rilutek and Tiglutik).

Four studies reported that patients using CAM were likely younger and had higher incomes. While a German study reported a yearly average cost of CAM of $4,700, with 65% of users not eligible for healthcare reimbursement for these therapies, a report from China estimated this cost at $270 per month per patient.

Several studies showed that patients opted for CAM to help with slowing disease progression, relieving symptoms, and managing side effects of medications. A study from Korea that dealt with perceptions of patients and family members found that some ALS patients saw CAM more as “functional health food” rather than medicine and believed that CAM practitioners overestimated the benefits of this treatment approach.

The percentage of patients saying CAM was beneficial for them varied from 9% in one study to 60% in another, while up to 63% of patients continued using them despite reporting no perceivable benefits. Others indicated unwanted side effects such as worsening of fasciculations, or muscle twitching, and gastrointestinal discomfort.

ALS patients got their information about CAM mostly from the internet, friends and relatives, and clinicians. Up to 78% of patients discussed their use of CAM with their clinician — a neurologist or primary care provider — only when the physician demonstrated a positive attitude toward this type of therapy. A substantial number of patients did not inform their clinician about using CAM for fear of subsequent declined care.

“Therefore, communication and non-disclosure of CAM use and a more in-depth understanding of CAM user profile among ALS patients and their decision-making processes are ostensibly significant issues for all health care providers involved in the care of ALS patients,“ the researchers wrote.

“Further evidence of efficacy is required if CAM is to be systematically integrated as a complement to conventional care,” they added. “This future work can provide an essential evidence platform for all those managing, providing, and seeking ALS care.”