An Introduction to the Duchenne Muscular Dystrophy Care Considerations

Additonal information on the 2018 updated Care considerations

Ward LM, Birnkrant DJ. An Introduction to the Duchenne Muscular Dystrophy Care Considerations. Pediatrics 2018;142:S1-s4.

Ward_2018_Pediatrics. Oct;142(Suppl 2);S1-S4

Leigh F, Ferlini A, Biggar D, et al. Neurology Care, Diagnostics, and Emerging Therapies of the Patient With Duchenne Muscular Dystrophy. Pediatrics 2018;142:S5-S16.

Leigh_2018_Pediatrics. Oct;142(Suppl 2);S5-S16

Case LE, Apkon SD, Eagle M, et al. Rehabilitation Management of the Patient With Duchenne Muscular Dystrophy. Pediatrics 2018;142:S17-S33.

Case_2018_Pediatrics. Oct;142(Suppl 2);S17-S33

Ward LM, Hadjiyannakis S, McMillan HJ, Noritz G, Weber DR. Bone Health and Osteoporosis Management of the Patient With Duchenne Muscular Dystrophy. Pediatrics 2018;142:S34-S42.

Ward_2018_Pediatrics. Oct;142(Suppl 2);S34-S42

Weber DR, Hadjiyannakis S, McMillan HJ, Noritz G, Ward LM. Obesity and Endocrine Management of the Patient With Duchenne Muscular Dystrophy. Pediatrics 2018;142:S43-S52.

Weber_2018_Pediatrics. Oct;142(Suppl 2);S43-S52

Brumbaugh D, Watne L, Gottrand F, et al. Nutritional and Gastrointestinal Management of the Patient With Duchenne Muscular Dystrophy. Pediatrics 2018;142:S53-S61.

Brumbaugh_2018_Pediatrics. Oct;142(Suppl 2);S53-S61

Sheehan DW, Birnkrant DJ, Benditt JO, et al. Respiratory Management of the Patient With Duchenne Muscular Dystrophy. Pediatrics  2018;142:S62-S71.

Sheehan_2018_Pediatrics. Oct;142(Suppl 2);S62-S71

Buddhe S, Cripe L, Friedland-Little J, et al. Cardiac Management of the Patient With Duchenne Muscular Dystrophy. Pediatrics 2018;142:S72-S81.

Buddhe_2018_Pediatrics. Oct;142(Suppl 2);S72-S81

Apkon SD, Alman B, Birnkrant DJ, et al. Orthopedic and Surgical Management of the Patient With Duchenne Muscular Dystrophy. Pediatrics 2018;142:S82-S89.

Apkon_2018_Pediatrics. Oct;142(Suppl 2);S82-S89

Noritz G, Naprawa J, Apkon SD, et al. Primary Care and Emergency Department Management of the Patient With Duchenne Muscular Dystrophy. Pediatrics 2018;142:S90-S98.

Noritz_2018_Pediatrics. Oct;142(Suppl 2);S90-S98

Colvin MK, Poysky J, Kinnett K, et al. Psychosocial Management of the Patient With Duchenne Muscular Dystrophy. Pediatrics 2018;142:S99-S109.

Colvin_2018_Pediatrics. Oct;142(Suppl 2);S99-S109

Trout CJ, Case LE, Clemens PR, et al. A Transition Toolkit for Duchenne Muscular Dystrophy. Pediatrics 2018;142:S110-S117.

Trout_2018_Pediatrics. Oct;142(Suppl 2);S110-S117

Ong KS, Kinnett K, Soelaeman R, et al. Evaluating Implementation of the Updated Care Considerations for Duchenne Muscular Dystrophy. Pediatrics 2018;142:S118-S128.

Abstract

In 2010, Bushby et al‍ published the first-ever international comprehensive guidance on the diagnosis and management of patients with Duchenne muscular dystrophy (DMD) for practitioners. These recommendations were instrumental in raising awareness about the scope of the clinical care issues affecting boys and men with DMD and in initiating discussion around the world about the need to improve the quality and standardization of care. Almost a decade later, again in collaboration with the US Centers for Disease Control and Prevention, these documents have been updated to reflect the current approaches to the diagnosis and management of DMD, with key principles divided into the following 3 main articles‍: part I: diagnosis, neuromuscular care, rehabilitation, and endocrine (growth, puberty, obesity, and adrenal suppression) and nutritional management; part II: respiratory, cardiac, osteoporosis, and orthopedic management;
and part III: primary, psychosocial, and emergency care and transitions of care across the lifespan.

For a multidisciplinary overview of assessments and interventions covering all topics and organized by stage of disease, see Fig 1, which is reproduced from the 2018 DMD Care Considerations published in The Lancet Neurology.‍ Additionally, each article in this supplement contains a figure or table reproduced from the DMD Care Considerations, with care guidance for each specialty. The purpose of the articles in this supplement is to give readers a window into the detailed thought processes behind these care considerations, including the complexities involved in decision-making, the medical controversies, and the future directions for research, all of which vary by subspecialty.

See also:

Birnkrant DJ, Bushby K, Bann CM, et al. Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and neuromuscular, rehabilitation, endocrine, and gastrointestinal and nutritional management. The Lancet. Neurology 2018;17:251-267.

Birnkrant_2018_Duchenne Care Considerations_Part1

Birnkrant DJ, Bushby K, Bann CM, et al. Diagnosis and management of Duchenne muscular dystrophy, part 2: respiratory, cardiac, bone health, and orthopaedic management. The Lancet. Neurology 2018;17:347-361.

Birnkrant_2018_Duchenne Care Considerations_Part2

Birnkrant DJ, Bushby K, Bann CM, et al. Diagnosis and management of Duchenne muscular dystrophy, part 3: primary care, emergency management, psychosocial care, and transitions of care across the lifespan. The Lancet. Neurology 2018;17:445-455.

Birnkrant_2018_Duchenne Care Considerations_Part3

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