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

Zhu, Yong; Romitti, Paul A.; Conway, Kristin M.; Andrews, Jennifer; Liu, Ke; Meaney, F. John; Street, Natalie; Puzhankara, Soman; Druschel, Charlotte M.; Matthews, Dennis J.

doi:10.1016/j.pediatrneurol.2014.02.003

- Add this to...
- Twitter
- Facebook
- Google Bookmarks
- LinkedIn

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

Published Date:

Feb 15 2014

Publisher's site:

http://dx.doi.org/10.1016/j.pediatrneurol.2014.02.003 New Site Icon

Source:

Pediatr Neurol. 2014; 51(1):71-77.

[PDF-274.09 KB]

Details:

Alternative Title:

Pediatr Neurol

Personal Author:

Zhu, Yong ; Romitti, Paul A. ; Conway, Kristin M. ; Andrews, Jennifer ; Liu, Ke ; ... More ▼

Description:

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.

Subject:

[+]

Pubmed ID:

24785967

Pubmed Central ID:

PMC4467767

Document Type:

Journal Article

Funding:

DD000189/DD/NCBDD CDC HHS/United States ; U01 DD000189/DD/NCBDD CDC HHS/United States ;

Collection(s):

CDC Public Access

Main Document Checksum:

[+]

Supporting Files:

nihms-696544.nxml

application/octet-stream

No Related Documents.

You May Also Like:

Prevalence of Duchenne and Becker Muscular Dystrophies in the United States

Personal Author:

Romitti, Paul A.; Zhu, Yong; Puzhankara, Soman; James, Katherine A.; Nabukera, Sarah K.; Zamba, Gideon K.D.; Ciafaloni, Emma; Cunniff, Christopher; Druschel, Charlotte M.; Mathews, Katherine D.; Matthews, Dennis J.; Meaney, F. John; Andrews, Jennifer G.; Caspers Conway, Kristin M.; Fox, Deborah J.; Street, Natalie; Adams, Melissa M.; Bolen, Julie;

Published Date:

Feb 16 2015

Source:

Pediatrics. 2015; 135(3):513-521.

Description:

OBJECTIVETo estimate prevalence of childhood-onset Duchenne and Becker muscular dystrophies (DBMD) in 6 sites in the United States by race/ethnicity and phenotype (Duchenne muscular dystrophy [DMD] or Becker muscular dystrophy [BMD]).METHODSIn 2002, ...

File Type:

[PDF - 631.51 KB]
Genitourinary health in a population-based cohort of males with Duchenne and Becker muscular dystrophies

Personal Author:

Zhu, Yong; Romitti, Paul A.; Conway, Kristin M. Caspers; Kim, Sunkyung; Zhang, Ying; Yang, Michele; Mathews, Katherine D.;

Corporate Authors:

MD STARnet

Published Date:

Jun 03 2015

Source:

Muscle Nerve. 52(1):22-27.

Description:

IntroductionGenitourinary (GU) health among patients with Duchenne and Becker muscular dystrophies (DBMD) has not been explored using population-based data.MethodsMedical records of 918 males ascertained by the Muscular Dystrophy Surveillance, Tracki...

File Type:

[PDF - 227.87 KB]
A Review of MD STARnet’s Research Contributions to Pediatric-Onset Dystrophinopathy in the United States; 2002–2017

Personal Author:

Sahay, Kashika M.; Smith, Tiffany; Conway, Kristin M.; Romitti, Paul A.; Lamb, Molly M.; Andrews, Jennifer; Pandya, Shree; Oleszek, Joyce; Cunniff, Christopher; Valdez, Rodolfo;

Corporate Authors:

on behalf of the MD STARnet

Published Date:

October 22 2018

Source:

J Child Neurol. 34(1):44-53

Description:

Population studies of rare disorders, such as Duchenne and Becker muscular dystrophies (dystrophinopathies), are challenging due to diagnostic delay and heterogeneity in disorder milestones. To address these challenges, the Centers for Disease Contro...

File Type:

[PDF - 619.35 KB]
Use of Complementary and Alternative Medicine by Males With Duchenne or Becker Muscular Dystrophy

Personal Author:

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

Corporate Authors:

MD STARnet

Published Date:

Dec 07 2011

Source:

J Child Neurol. 27(6):734-740.

Description:

Use of complementary and alternative medicine by males with Duchenne or Becker muscular dystrophy was examined using interview reports from caregivers enrolled in the population-based Muscular Dystrophy Surveillance, Tracking, and Research Network. O...

File Type:

[PDF - 230.78 KB]
Secondary conditions among males with Duchenne or Becker muscular dystrophy

Personal Author:

Latimer, Rebecca; Street, Natalie; Conway, Kristin Caspers; James, Kathy; Cunniff, Christopher; Oleszek, Joyce; Fox, Deborah; Ciafaloni, Emma; Westfield, Christina; Paramsothy, Pangaja;

Corporate Authors:

Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STAR

Published Date:

Apr 09 2017

Source:

J Child Neurol. 32(7):663-670.

Description:

Duchenne and Becker muscular dystrophy are X-linked neuromuscular disorders characterized by progressive muscle degeneration. Despite the involvement of multiple systems, secondary conditions among affected males have not been comprehensively describ...

File Type:

[PDF - 632.91 KB]