Diagnosis and management of Duchenne muscular dystrophy, part 3: primary care, emergency management, psychosocial care, and transitions of care across the lifespan | DuchenneXchange

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Diagnosis and management of Duchenne muscular dystrophy, part 3: primary care, emergency management, psychosocial care, and transitions of care across the lifespan

key information

source: The Lancet Neurology

year: 2018

authors: Birnkrant DJ, Bushby K, Bann CM, Apkon SD, Blackwell A, Colvin MK, Cripe L, Herron AR, Kennedy A, Kinnett K, Naprawa J, Noritz G, Poysky J, Street N, Trout CJ, Weber DR, Ward LM, DMD Care Considerations Working Group

summary/abstract:

Improvements in the function, quality of life, and longevity of patients with Duchenne muscular dystrophy (DMD) have been achieved through a multidisciplinary approach to management across a range of health-care specialties. In part 3 of this update of the DMD care considerations, we focus on primary care, emergency management, psychosocial care, and transitions of care across the lifespan. Many primary care and emergency medicine clinicians are inexperienced at managing the complications of DMD. We provide a guide to the acute and chronic medical conditions that these first-line providers are likely to encounter. With prolonged survival, individuals with DMD face a unique set of challenges related to psychosocial issues and transitions of care. We discuss assessments and interventions that are designed to improve mental health and independence, functionality, and quality of life in critical domains of living, including health care, education, employment, interpersonal relationships, and intimacy.

organisation: Case Western Reserve University, Cleveland, USA; Newcastle University, Newcastle upon Tyne, UK; RTI International, Research Triangle Park, NC, USA; Seattle Children's Hospital, Seattle, WA, USA; Duke University School of Medicine, Durham, USA; University of Pittsburgh School of Medicine, and Neurology Service, Pittsburgh, USA; Children's Hospital of Eastern Ontario, and University of Ottawa, Canada; University of Rochester, Rochester, NY, USA; Centers for Disease Control and Prevention, Atlanta, GA, USA; Children's Hospital of Philadelphia, Philadelphia, USA; Kennedy Krieger Institute, and Johns Hopkins School of Medicine, Baltimore, USA; Golisano Children's Hospital, University of Rochester Medical Center, Rochester, USA; Stead Family Department of Pediatrics, University of Iowa, Iowa City, USA

DOI: 10.1016/S1474-4422(18)30026-7

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