Complementary and Alternative Medicine for Duchenne and Becker Muscular Dystrophies: Characteristics of Users and Caregivers

Pediatric Neurology

Volume 51, Issue 1, July 2014, Pages 71–77

Original Article

• Yong Zhu, PhD^a,
• Paul A. Romitti, PhD^{a, ,} ,
• Kristin M. Conway, PhD^a,
• Jennifer Andrews, MBA^b,
• Ke Liu, MS^c,
• F. John Meaney, PhD^b,
• Natalie Street, MS^d,
• Soman Puzhankara, MS^a,
• Charlotte M. Druschel, MD^e,
• Dennis J. Matthews, MD^f

doi:10.1016/j.pediatrneurol.2014.02.003

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Abstract

Background

Complementary and alternative medicine is frequently used in the management of chronic pediatric diseases, but little is known about its use by those with Duchenne or Becker muscular dystrophy.

Methods

Complementary and alternative medicine use by male patients with Duchenne or Becker muscular dystrophy and associations with characteristics of male patients and their caregivers were examined through interviews with 362 primary caregivers identified from the Muscular Dystrophy Surveillance, Tracking, and Research Network.

Results

Overall, 272 of the 362 (75.1%) primary caregivers reported that they had used any complementary and alternative medicine for the oldest Muscular Dystrophy Surveillance, Tracking, and Research Network male in their family. The most commonly reported therapies were from the mind-body medicine domain (61.0%) followed by those from the biologically based practice (39.2%), manipulative and body-based practice (29.3%), and whole medical system (6.9%) domains. Aquatherapy, prayer and/or blessing, special diet, and massage were the most frequently used therapies. Compared with nonusers, male patients who used any therapy were more likely to have an early onset of symptoms and use a wheel chair; their caregivers were more likely to be non-Hispanic white. Among domains, associations were observed with caregiver education and family income (mind-body medicines [excluding prayer and/or blessing only] and whole medical systems) and Muscular Dystrophy Surveillance, Tracking, and Research Network site (biologically based practices and mind-body medicines [excluding prayer and/or blessing only]).

Conclusions

Complementary and alternative medicine use was common in the management of Duchenne and Becker muscular dystrophies among Muscular Dystrophy Surveillance, Tracking, and Research Network males. This widespread use suggests further study to evaluate the efficacy of integrating complementary and alternative medicine into treatment regimens for Duchenne and Becker muscular dystrophies.

Keywords

• Becker muscular dystrophy;
• complementary therapies;
• Duchenne muscular dystrophy;
• neuromuscular diseases

Communications should be addressed to: Dr. Romitti; Department of Epidemiology; College of Public Health; The University of Iowa; S416 CPHB; 145 N Riverside Dr; Iowa City, IA 52242.

Copyright © 2014 Elsevier Inc. Published by Elsevier Inc. All rights reserved.