Diagnosis and management of Duchenne muscular dystrophy, part 2: implementation of multidisciplinary care

被引:734
作者
Bushby, Katharine [1 ]
Finkel, Richard [2 ]
Birnkrant, David J. [7 ]
Case, Laura E. [8 ]
Clemens, Paula R. [9 ,10 ]
Cripe, Linda [11 ]
Kaul, Ajay [12 ]
Kinnett, Kathi [11 ]
McDonald, Craig [13 ]
Pandya, Shree [14 ]
Poysky, James [15 ]
Shapiro, Frederic [16 ]
Tomezsko, Jean [3 ,4 ,5 ,6 ]
Constantin, Carolyn [17 ]
机构
[1] Newcastle Univ, Inst Human Genet, Int Ctr Life, Newcastle Upon Tyne NE1 3BZ, Tyne & Wear, England
[2] Childrens Hosp Philadelphia, Div Neurol, Philadelphia, PA 19104 USA
[3] Childrens Hosp Philadelphia, Div Pulm Med, Philadelphia, PA 19104 USA
[4] Childrens Hosp Philadelphia, Div Gastroenterol, Philadelphia, PA 19104 USA
[5] Childrens Hosp Philadelphia, Div Hepatol, Philadelphia, PA 19104 USA
[6] Childrens Hosp Philadelphia, Div Nutr, Philadelphia, PA 19104 USA
[7] Case Western Reserve Univ, Div Pediat Pulm Med, Metrohlth Med Ctr, Cleveland, OH 44106 USA
[8] Duke Univ, Div Phys Therapy, Dept Community & Family Med, Durham, NC USA
[9] Univ Pittsburgh, Dept Neurol Mol Genet & Biochem, Pittsburgh, PA USA
[10] Dept Vet Affairs Med Ctr, Pittsburgh, PA USA
[11] Cincinnati Childrens Hosp, Med Ctr, Div Cardiol, Cincinnati, OH USA
[12] Cincinnati Childrens Hosp, Med Ctr, Div Pediat Gastroenterol Hepatol & Nutr, Cincinnati, OH USA
[13] Univ Calif Davis, Dept Phys Med & Rehabil, Davis, CA 95616 USA
[14] Univ Rochester, Dept Neurol, Rochester, NY USA
[15] Baylor Coll Med, Sch Allied Hlth Sci, Houston, TX 77030 USA
[16] Childrens Hosp, Dept Orthopaed Surg, Boston, MA 02115 USA
[17] Ctr Dis Control & Prevent, Natl Ctr Birth Defects & Dev Disabil, Atlanta, GA USA
关键词
MECHANICAL INSUFFLATION-EXSUFFLATION; VENTRICULAR SYSTOLIC DYSFUNCTION; ANKLE-FOOT ORTHOSES; PEAK COUGH FLOW; NONINVASIVE VENTILATION; DILATED CARDIOMYOPATHY; VERTEBRAL COMPRESSION; REHABILITATION MANAGEMENT; PHYSICAL-ACTIVITY; SPINAL-FUSION;
D O I
10.1016/S1474-4422(09)70272-8
中图分类号
R74 [神经病学与精神病学];
学科分类号
摘要
Optimum management of Duchenne muscular dystrophy (DMD) requires a multidisciplinary approach that focuses on anticipatory and preventive measures as well as active interventions to address the primary and secondary aspects of the disorder. Implementing comprehensive management strategies can favourably alter the natural history of the disease and improve function, quality of life, and longevity. Standardised care can also facilitate planning for multicentre trials and help with the identification of areas in which care can be improved. Here, we present a comprehensive set of DMD care recommendations for management of rehabilitation, orthopaedic, respiratory, cardiovascular, gastroenterology/nutrition, and pain issues, as well as general surgical and emergency-room precautions. Together with part 1 of this Review, which focuses on diagnosis, pharmacological treatment, and psychosocial care, these recommendations allow diagnosis and management to occur in a coordinated multidisciplinary fashion.
引用
收藏
页码:177 / 189
页数:13
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