Use of Complementary and Alternative Medicine in Children with Neuromuscular Disorders Followed at Penn State Health Pediatric Muscular Dystrophy Association Care Center Clinic.

The exact prevalence of complementary and alternative medicine (CAM) use is not known in pediatric patients with neuromuscular diseases followed by any of the 150 Muscular Dystrophy Association (MDA) Care Center Clinics nationwide. This study describes the prevalence and variety of CAM usage in this population, while also assessing the prevalence of caregiver disclosure of CAM use and caregiver perception of provider support for CAM. Fifty-two caregivers of pediatric patients seen at Penn State Health's Pediatric MDA Care Center Clinic completed our online survey. Overall, 19.2% of caregivers reported CAM use by their child. Less than half of caregivers reported discussing CAM use with their child's neurologist (41.5%); however, a majority of respondents reported interest in using CAM for their child in the future (52.8%). Understanding the prevalence of CAM usage and disclosure in pediatric MDA clinics may facilitate safer use of CAM in this community.

[1]  E. Lehman,et al.  Complementary and Alternative Medicine (CAM) use in Children with Epilepsy , 2022, Journal of child neurology.

[2]  M. Farrar,et al.  Growth and nutrition in pediatric neuromuscular disorders. , 2021, Clinical nutrition.

[3]  A. Kirton,et al.  Complementary and Alternative Therapy Use in Children with Cerebral Palsy , 2020, Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques.

[4]  D. Byler,et al.  Use of Complementary and Alternative Medicine in Children With Tourette Syndrome , 2020, Journal of child neurology.

[5]  F. Sadeghifar,et al.  Complementary and Alternative Medicine for Painful Peripheral Neuropathy , 2019, Current Treatment Options in Neurology.

[6]  Hilary H. McClafferty Pediatric Integrative Medicine. , 2019, Pediatric annals.

[7]  J. Wardle,et al.  Disclosure of complementary medicine use to medical providers: a systematic review and meta-analysis , 2019, Scientific Reports.

[8]  A. Yelnik,et al.  Non-pharmacological interventions for spasticity in adults: An overview of systematic reviews. , 2017, Annals of physical and rehabilitation medicine.

[9]  J. Dowling,et al.  Treating pediatric neuromuscular disorders: The future is now , 2017, American journal of medical genetics. Part A.

[10]  S. Jenkins,et al.  Patient Use of Complementary and Alternative Medicines in an Outpatient Pediatric Neurology Clinic. , 2016, Pediatric neurology.

[11]  P. Johnson,et al.  Nondisclosure of Complementary and Alternative Medicine Use to Primary Care Physicians: Findings From the 2012 National Health Interview Survey. , 2016, JAMA internal medicine.

[12]  P. Romitti,et al.  Complementary and alternative medicine for Duchenne and Becker muscular dystrophies: characteristics of users and caregivers. , 2014, Pediatric neurology.

[13]  T. Matthews,et al.  Parental perspectives on use, benefits, and physician knowledge of complementary and alternative medicine in children with autistic disorder and attention-deficit/hyperactivity disorder. , 2013, Journal of alternative and complementary medicine.

[14]  S. Pandya,et al.  Use of Complementary and Alternative Medicine by Males With Duchenne or Becker Muscular Dystrophy , 2012, Journal of child neurology.

[15]  P. Harris,et al.  Research electronic data capture (REDCap) - A metadata-driven methodology and workflow process for providing translational research informatics support , 2009, J. Biomed. Informatics.

[16]  B. Niggemann,et al.  Side‐effects of complementary and alternative medicine , 2003, Allergy.

[17]  T J David,et al.  Nutritional hazards of elimination diets in children with atopic eczema. , 1984, Archives of disease in childhood.

[18]  B. Morrison Neuromuscular Diseases , 2016, Seminars in Neurology.