title: 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 <euro>489/year for children and <euro>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.
authors.affiliation: Nijmegen Centre for Mitochondrial Disorders (NCMD) at the Amalia Children's Hospital, Radboudumc, P.O. Box 9101, 6500 HB, Nijmegen, The Netherlands.
authors.forename: Sebastian
authors.initials: S
authors.lastname: Franik
authors.forename: Hidde H
authors.initials: HH
authors.lastname: Huidekoper
authors.forename: Gepke
authors.initials: G
authors.lastname: Visser
authors.forename: Maaike
authors.initials: M
authors.lastname: de Vries
authors.forename: Lonneke
authors.initials: L
authors.lastname: de Boer
authors.forename: Marion
authors.initials: M
authors.lastname: Hermans-Peters
authors.forename: Richard
authors.initials: R
authors.lastname: Rodenburg
authors.forename: Chris
authors.initials: C
authors.lastname: Verhaak
authors.forename: Arine M
authors.initials: AM
authors.lastname: Vlieger
authors.forename: Jan A M
authors.initials: JA
authors.lastname: Smeitink
authors.forename: Mirian C H
authors.initials: MC
authors.lastname: Janssen
authors.forename: Saskia B
authors.initials: SB
authors.lastname: Wortmann
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D002648:Child; D002675:Child, Preschool; D000529:Complementary Therapies / Q000191:economics* / Q000379:methods*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D028361:Mitochondrial Diseases / Q000628:therapy*; D004366:Nonprescription Drugs / Q000627:therapeutic use*; D010465:Perception; D011795:Surveys and Questionnaires; D016896:Treatment Outcome; D055815:Young Adult
chemical_list: D004366:Nonprescription Drugs