P.279Pragmatic cognitive and psychosocial health monitoring in clinical practice in Duchenne muscular dystrophy

2019 ◽  
Vol 29 ◽  
pp. S148-S149
Author(s):  
M. Thangarajh ◽  
A. Kaat ◽  
K. Hardy ◽  
K. Wagner
Keyword(s):  
Clinical Practice ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Health Monitoring ◽  
Psychosocial Health

EP.71Behavioral problems in Duchenne muscular dystrophy: how do we manage them in clinical practice?

2019 ◽  
Vol 29 ◽  
pp. S173
Author(s):  
S. Geuens ◽  
M. Verly ◽  
J. Lemiere ◽  
N. Goemans ◽  
L. De Waele
Keyword(s):  
Clinical Practice ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy

Association Between Health-Related Quality of Life and Motor Function in Ambulant and Nonambulant Duchenne Muscular Dystrophy Patients

2019 ◽  
Vol 34 (14) ◽  
pp. 873-885
Author(s):  
Vanya Gocheva ◽  
Simone Schmidt ◽  
Anna-Lena Orsini ◽  
Patricia Hafner ◽  
Sabine Schaedelin ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Motor Function ◽  
Psychosocial Health ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Function Measure

This cross-sectional study assessed health-related quality of life (HRQOL) in ambulant and nonambulant patients with Duchenne muscular dystrophy, and explored the association between health-related quality of life and clinically assessed motor function. The Pediatric Quality of Life Inventory (PedsQL) Generic Core Scale and PedsQL Neuromuscular module were completed by 34 parent-child dyads. Association between PedsQL scores and overall motor abilities and the transfers and standing posture domain measured by the Motor Function Measure were examined. Child self-reported and parent proxy-reported mean PedsQL scores for children with Duchenne muscular dystrophy were lower than those for healthy children for the physical and psychosocial health-related quality of life. Fifty-six percent of patients reported clinically impaired psychosocial health-related quality of life scores. Several aspects of the generic and disease-specific health-related quality of life in patients with Duchenne muscular dystrophy were positively associated to overall motor function and transfers and standing posture domain. Associations remained stable when adjusted for age and corticosteroid use. The Motor Function Measure is clinically meaningful in the context of a patient’s day-to-day life.

scholarly journals Fractures and bone health monitoring in boys with Duchenne muscular dystrophy managed within the Scottish Muscle Network

2019 ◽  
Vol 29 (1) ◽  
pp. 59-66 ◽  
Author(s):  
Shuko Joseph ◽  
Cunyi Wang ◽  
Marina Di Marco ◽  
Iain Horrocks ◽  
Ishaq Abu-Arafeh ◽  
...  
Keyword(s):  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Health Monitoring ◽  
Bone Health

scholarly journals Clinical practice with steroid therapy for Duchenne muscular dystrophy: An expert survey in Asia and Oceania

2020 ◽  
Vol 42 (3) ◽  
pp. 277-288
Author(s):  
Fumi Takeuchi ◽  
Harumasa Nakamura ◽  
Naohiro Yonemoto ◽  
Hirofumi Komaki ◽  
Raymond L. Rosales ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Steroid Therapy ◽  
Expert Survey

Natural History of Serum Enzyme Levels in Duchenne Muscular Dystrophy and Implications for Clinical Practice

2020 ◽  
Vol 99 (12) ◽  
pp. 1121-1128
Author(s):  
Maricela Rodríguez-Cruz ◽  
Tomas Almeida-Becerril ◽  
Salvador Atilano-Miguel ◽  
Alan Cárdenas-Conejo ◽  
Mariela Bernabe-García
Keyword(s):  
Clinical Practice ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Natural History ◽  
Serum Enzyme ◽  
History Of
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