What are the CDC recommendations for care and support of patients with Duchenne muscular dystrophy (DMD)?

Updated: Aug 17, 2020
  • Author: Twee T Do, MD; Chief Editor: Jeffrey D Thomson, MD  more...
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Answer

Care/support intervention recommendations include the following:

  • A care coordinator with sufficient training in clinical care for DMD should serve as a point of contact for the family (eg, to meet family information needs, schedule and coordinate appointments, facilitate communication with clinicians)
  • Home health-care services should be used if a patient's health is at risk because sufficient care cannot be provided in the current setting or circumstances; may also be appropriate when the current care providers cannot sufficiently meet the patient's care needs
  • Transition planning and self-advocacy in medical care, facilitating transfer to a new medical care team, and developing educational and vocational opportunities
  • Palliative care for pain management, as needed; emotional and spiritual support; and guidance for treatment and medical decisions
  • Hospice care for end-stage patients

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