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

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.

Prevalence of Duchenne and Becker Muscular Dystrophies in the United States

“…Only these data were available to generate residence history for each case; however, comparison of residence histories constructed from surveillance data with self-reports from a subgroup of caregivers showed a high concordance, suggesting we captured the years of residence for cases. Our previous comparison 48 of selected characteristics showed little difference between caregiver participants and nonparticipants, suggesting that our comparison of residence histories may be extended to all caregivers. Also, available medical records may have contained insufficient information for diagnostic milestones and disease progression, reflected in part, by differing percentages of possible cases across sites in the earlier quinquennia.…”

Evaluation of Trends in the Use of Complementary and Alternative Medicine in Health Centers in Khorramabad (West of Iran)

“…Recently, Bar-Sela et al, showed that CAM improved significantly outcomes of cancer patients who completed six weekly sessions, regardless of their demographic characteristics ( Bar-Sela et al, 2013) . Researchers showed that Complementary and alternative medicine use was common in the Diabetes Mellitus ( Naja Mousa, Alameddine, Shoaib, Itani, & Mourad, 2014 ), Eczema ( Silverberg, Lee-Wong, & Silverberg, 2014) , Duchenne and Becker muscular dystrophies ( Zhu et al, 2014) patients. Studies have shown that welcomes people to complementary medicine techniques growing rapidly increasing in developed and developing countries.…”

Health services received by individuals with duchenne/becker muscular dystrophy

“…Surveillance data were used for comparison of demographic characteristics between participants and all eligible individuals to examine possible participation bias. Chi‐square tests were conducted on case status, study site, child year of birth, child vital status, caregiver relationship, maternal age at interview, maternal race/ethnicity, and maternal education, and results have been reported by Zhu et al …”