New DMD Care Recommendations

After a year of planning, new recommendations for physicians caring for DMD patients have been released

by Amy Madsen on December 3, 2009 - 4:23pm

A comprehensive set of clinical care recommendations for the diagnosis and management of Duchenne muscular dystrophy (DMD) is now available to medical professionals and families.

The complete recommendations,  in printable PDF format, can be read here:

Prepared by the DMD Care Considerations Working Group under the auspices of the U.S. Centers for Disease Control and Prevention, the recommendations outline standard guidelines that doctors and other medical professionals and caregivers can use to design and implement the best plan of care for an individual with DMD. 

Based on analysis by experts in the field, the DMD care recommendations will help medical professionals and families recognize and deal with the effects of DMD through coordinated treatment orchestrated by a multidisciplinary health care team.

Valerie Cwik, MDA’s medical director and executive vice president for research, served on the steering and publication committees, and a number of MDA-affiliated physicians also were involved in the guidelines' development.

Why do we need guidelines?

Prompt diagnosis and appropriate management of DMD symptoms is crucial to providing the best quality of life to those living with the disease.

Comprehensive, standardized care also will facilitate the planning of future clinical trials for different DMD treatments.  

It’s also hoped the guidelines will “encourage patients and families to think about the circle of caregivers needed for their children," said Elizabeth McNally, a cardiologist and member of MDA’s Scientific Advisory Committee, who worked on the recommendations. The recommendations spell out a level of care that will help children with DMD to live into adulthood. 

The recommendations

Experts identified the multidisciplinary approach and multidisciplinary team as a "key" aspect of proper care in DMD and advised that patients and family members should maintain an open relationship with their primary care coordinator. This role may be filled by any of a number of specialists, including a neurologist or pediatric neurologist, rehabilitation specialist, neurogeneticist, pediatric orthopedist, pediatrician or primary care physician.

Topics addressed in the guidelines include:

  • Diagnosis
  • Pharmacological interventions designed to enhance or preserve muscle strength and function
  • Other drugs/supplements
  • Psychosocial management
  • Assessments
  • Interventions
  • Management of muscle extensibility and joint contractures
    • Physical therapy interventions
    • Assistive devices for musculoskeletal management
    • Surgical intervention for lower-limb contractures
    • Early ambulatory phase
    • Middle ambulatory phase
    • Late ambulatory phase
    • Early non-ambulatory phase
    • Late non-ambulatory phase
  • Assistive/adaptive devices for function
  • Recommendations for exercise
  • Skeletal management – spinal management, bone health management, fracture management
  • Respiratory management
  • Cardiac management – echocardiograms, electrocardiograms and monitoring the heart
  • Nutritional, swallowing, gastrointestinal, and speech and language management
  • Pain management
  • Surgical considerations – anesthetic agents, blood loss, cardiac considerations, respiratory considerations
  • Emergency care considerations

Physicians in MDA clinics are likely to be aware of these new care recommendations. People with DMD who are not attending an MDA clinic may wish to inform their physicians of the new guidelines.

A family-friendly version of the guidelines currently is under development, to be published at a later date.

Editor's note: In January 2010, Lancet Neurology published a revised version of part 2 of its DMD management guidelines (see Diagnosis and management of Duchenne muscular dystrophy, part 2: implementation of multidisciplinary care). The new version contains an "Erratum" on its last page (page 189) clarifying that physicians must proceed cautiously when using opiates or other sedating medications, as well as when using oxygen without ventilation. The original text, on page 185, is unclear on this subject.

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