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Guides & Guidelines

Primary care and emergency department management of the patient with Duchenne muscular dystrophy

key information

source: Pediatrics

year: 2018

authors: Noritz G, Naprawa J, Apkon SD, Kinnett K, Racca F, Vroom E, Birnkrant DJ


Primary care providers (PCPs) are usually the first point of contact with the health care system for patients with Duchenne muscular dystrophy (DMD), and patients often present to emergency departments in which providers have little experience in dealing with this condition. With this article, we give primary care and emergency medicine providers a background in the common issues that affect people with DMD. By acquiring some specialized knowledge about the multisystem medical complications of DMD and by applying general principles of primary care, such as timely immunization, anticipatory safety counseling, behavioral screening, and routine nutritional and developmental assessments, the PCP can be a valued and effective medical provider to patients with DMD.

The PCP can provide access to and effective coordination among the patient’s specialty caregivers. Moreover, the PCP can become a trusted advisor to the patient and his family about important medical decisions, as well as issues in the psychosocial, behavioral, and educational domains. This article also contains a “pocket guide” used to assess and manage common urgent medical problems that cause patients with DMD to seek care in the emergency department. With the background information discussed in this article, both PCPs and emergency medicine physicians can skillfully care for patients with DMD in their respective settings, optimizing patient outcomes.

organization: Nationwide Children's Hospital, USA; UCSF Benioff Children's Hospital, USA; Seattle Children's Hospital, USA; Parent Project Muscular Dystrophy, USA; Alessandria General Hospital, Italy; Duchenne Parent Project Netherlands, Netherlands; Case Western Reserve University, USA

DOI: 10.1542/peds.2018-0333K

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