Use of Complementary and Alternative Medicine by Males With Duchenne or Becker Muscular Dystrophy

Nabukera, Sarah K.; Romitti, Paul A.; Campbell, Kimberly A.; Meaney, F. John; Caspers, Kristin; Mathews, Katherine D.; Sherlock, Stacey Hockett; Puzhankara, Soman; Cunniff, Christopher; Druschel, Charlotte M.; Pandya, Shree; Matthews, Dennis J.; Ciafaloni, Emma

doi:10.1177/0883073811426501

Cited by 22 publications

(40 citation statements)

References 29 publications

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“…This helplessness and the lack of evidence-based alternatives leaves open a large market for non-evidence-based CAM use in patients with mitochondrial disease. Comparable rates of CAM use (∼80 %) have been reported in pediatric patients with Duchenne or Becker muscular dystrophy (Nabukera et al 2012). For patients with lysosomal storage disorders, the use of CAM reported in one single-center study was lower: C 8 %/A 45 % for type I Gaucher disease, C 50 %/A41 % of Fabry disease, and C 33 %/A 47 % of type B Niemann-Pick patients (Balwani et al 2009).…”

Section: Discussionmentioning

confidence: 93%

High prevalence of complementary and alternative medicine use in patients with genetically proven mitochondrial disorders

Franik¹,

Huidekoper

Visser

et al. 2014

J of Inher Metab Disea

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Despite major advances in understanding the pathophysiology of mitochondrial diseases, clinical management of these conditions remains largely supportive, and no effective treatment is available. We therefore assumed that the burden of disease combined with the lack of adequate treatment leaves open a big market for complementary and alternative medicine use. The objective of this study was to evaluate the use and perceived effectiveness of complementary and alternative medicine in children and adults with genetically proven mitochondrial disease. The reported use was surprisingly high, with 88 % of children and 91 % of adults having used some kind of complementary and alternative medicine in the last 2 years. Also, the mean cost of these treatments was impressive, being €489/year for children and €359/year for adult patients. Over-the-counter remedies (e.g., food supplements, homeopathy) and self-help techniques (e.g., Reiki, yoga) were the most frequently used complementary and alternative therapies in our cohort: 54 % of children and 60 % of adults reported the various complementary and alternative medicine therapies to be effective. Given the fact that currently no effective treatment exists, further research toward the different therapies is needed, as our study clearly demonstrates that such therapies are highly sought after by affected patients.

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Section: Discussionmentioning

confidence: 93%

High prevalence of complementary and alternative medicine use in patients with genetically proven mitochondrial disorders

Franik¹,

Huidekoper

Visser

et al. 2014

J of Inher Metab Disea

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“…If symptoms occurred before the sixth birthday, disease was classified as early onset, otherwise it was classified as late onset. 16 The number of years since disease diagnosis was calculated as the difference between age at interview and age at diagnosis. If the male was deceased at the time of interview, the age at death was used instead of the age at interview.…”

Section: Methodsmentioning

confidence: 99%

“…A study using data from a population-based cohort of male patients with Duchenne or Becker muscular dystrophy identified by the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STAR net ) estimated that 80% of families used CAM for their children. 16 This analysis also evaluated the impact of care-giver characteristics on CAM use and observed caregivers who reported use of whole medical system therapies for their childrenwere more likely to have college education and a higher family income. 16 …”

Section: Introductionmentioning

confidence: 99%

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

Zhu¹,

Romitti²,

Conway³

et al. 2014

Pediatric Neurology

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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.

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“…Data from the MD STARnet were reviewed to determine frequency and types of use of complementary and alternative medical treatments and showed that 80 % of caregivers reported using complementary and alternative treatments at least once [42].…”

Section: Complementary and Alternative Treatmentsmentioning

confidence: 99%

Current Concepts in the Management of Duchenne Muscular Dystrophy

Rinaldi

Mayer

Dichiaro

2013

Curr Phys Med Rehabil Rep

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The management of Duchenne muscular dystrophy (DMD) has seen dramatic change over the past two decades. Improvements in clinical monitoring of disease progression, management of cardiac and pulmonary complications, and nutritional intervention have all led to decreases in co-morbidity commonly associated with DMD, and, as a consequence, quality of life and life expectancy of individuals with DMD have both continued to improve. This review will update the reader on current trends and recent advances in the diagnosis, management, and treatment of DMD, with a focus on reviewing pertinent current literature.

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Use of Complementary and Alternative Medicine by Males With Duchenne or Becker Muscular Dystrophy

Cited by 22 publications

References 29 publications

High prevalence of complementary and alternative medicine use in patients with genetically proven mitochondrial disorders

High prevalence of complementary and alternative medicine use in patients with genetically proven mitochondrial disorders

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

Current Concepts in the Management of Duchenne Muscular Dystrophy

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