High prevalence of complementary and alternative medicine use in patients with genetically proven mitochondrial disorders

Abstract

Despite major advances in understanding the pathophysiology of mitochondrial diseases, clinical management of these conditions remains largely supportive, and no effective treatment is available. We therefore assumed that the burden of disease combined with the lack of adequate treatment leaves open a big market for complementary and alternative medicine use. The objective of this study was to evaluate the use and perceived effectiveness of complementary and alternative medicine in children and adults with genetically proven mitochondrial disease. The reported use was surprisingly high, with 88 % of children and 91 % of adults having used some kind of complementary and alternative medicine in the last 2 years. Also, the mean cost of these treatments was impressive, being €489/year for children and €359/year for adult patients. Over-the-counter remedies (e.g., food supplements, homeopathy) and self-help techniques (e.g., Reiki, yoga) were the most frequently used complementary and alternative therapies in our cohort: 54 % of children and 60 % of adults reported the various complementary and alternative medicine therapies to be effective. Given the fact that currently no effective treatment exists, further research toward the different therapies is needed, as our study clearly demonstrates that such therapies are highly sought after by affected patients.

Patients With Mitochondrial Disease Have an Inadequate Nutritional Intake

“…Previous research regarding supplement use among patients with MD in a partly overlapping cohort (n = 33) revealed that 70% of them used nutrition supplements . These data are corroborated by our findings in this cohort (68%).…”

Pragmatic Model for Integrating Complementary and Alternative Medicine in Primary Care Management of Chronic Musculoskeletal Pain

“…Questioned homeopaths, osteopaths and naturopaths shared the opinion that three to four treatments would suffice, whereas acupuncturists whished for more treatments (six to seven). A recent study in the Netherlands showed that chronic patients suffering from mitochondrial diseases spend up to €489 on CAM therapies per year out of the pocket [38]. Further studies are warranted to investigate what patients would be willing to pay themselves on CAM therapies and what should be reimbursed.…”

Adverse events associated with pediatric complementary and alternative medicine in the Netherlands: a national surveillance study

“…Numbers about the use of "over-thecounter" CAM treatments like supplements or herbs are lacking in the general population, but 12% of children visiting a pediatrician in the Netherlands are using these kinds of CAM treatments [3]. Higher prevalences have been reported in Dutch children with chronic or life-threatening diseases, who experience side effects from conventional medicine, or do not respond to regular treatments [4][5][6].…”