Complementary and alternative medicine for Duchenne and Becker muscular dystrophies: characteristics of users and caregivers.
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.
Department of Epidemiology, The University of Iowa, Iowa City, Iowa.
Yong
Y
Zhu
Department of Epidemiology, The University of Iowa, Iowa City, Iowa. Electronic address: paul-romitti@uiowa.edu.
Paul A
PA
Romitti
Department of Epidemiology, The University of Iowa, Iowa City, Iowa.
Kristin M
KM
Conway
Department of Pediatrics, The University of Arizona, Tucson, Arizona.
Jennifer
J
Andrews
Department of Biostatistics, The University of Iowa, Iowa City, Iowa.
Ke
K
Liu
Department of Pediatrics, The University of Arizona, Tucson, Arizona.
F John
FJ
Meaney
National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia.
Natalie
N
Street
Department of Epidemiology, The University of Iowa, Iowa City, Iowa.
Soman
S
Puzhankara
New York State Department of Health, Troy, New York.
Charlotte M
CM
Druschel
Department of Physical Medicine and Rehabilitation, University of Colorado, Aurora, Colorado.
Dennis J
DJ
Matthews
D000328:Adult; D017028:Caregivers / Q000523:psychology*; D018672:Community Health Planning; D000529:Complementary Therapies / Q000379:methods*; D006801:Humans; D007406:Interview, Psychological; D008297:Male; D008875:Middle Aged; D020388:Muscular Dystrophy, Duchenne / Q000523:psychology* / Q000628:therapy*; D012189:Retrospective Studies; D055815:Young Adult
Becker muscular dystrophy; Duchenne muscular dystrophy; complementary therapies; neuromuscular diseases