Use of complementary and alternative medicine in patients with inborn errors of metabolism: A single‐center study

BACKGROUND AND OBJECTIVES: There is a paucity of information on the use of complementary and alternative medicine (CAM) in patients with inborn errors of metabolism (IEM). This study's objective was to evaluate the self‐reported use and perceived effectiveness of CAM in adults and children with IEM. METHODS: Patients aged 0‐70 years and caregivers seen at the London Health Sciences Centre Metabolic Clinic (London, Ontario, Canada) between July 2017 and August 2017 were recruited to complete a questionnaire regarding CAM use to help their IEM diagnosis and perceived effectiveness of these therapies. Survey responses were analyzed using descriptive statistics; age, sex, and education level associations among CAM users were tested using the Pearson χ (2) test. RESULTS: Of 50 potential participants, 44 (88%) completed the questionnaire, including 21 adults (6 by caregivers) and 23 children (22 by caregivers). The most common IEM category was Aminoacidopathies and Small Molecule Disorders (50%). Twenty‐seven (61%) participants reported CAM use to help their IEM diagnosis. The most common CAM therapies used were chiropractic manipulation, omega‐3 fatty acids, probiotics, and aromatherapy/essential oils. Most CAM users and caregivers (74%) perceived their CAM therapies as effective overall. Among CAM users, 40% had not discussed CAM use with a health care professional (HCP). CAM use was similar when comparing age, sex and education level. CONCLUSIONS: CAM is commonly used among patients with IEM. The safety and efficacy of CAM therapies for IEM should be further investigated. HCPs and patients should openly discuss CAM use in order to evaluate safety.