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Updated: Feb 8, 2026
09:18
Measurements of Motor Function and Other Clinical Outcome Parameters in Ambulant Children with Duchenne Muscular Dystrophy
Published on: January 12, 2019
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Implementation of Duchenne Muscular Dystrophy Care Considerations
Jennifer G Andrews1, Kristin Conway2, Christina Westfield3
1Department of Pediatrics, University of Arizona, Tucson, Arizona; jandrews@peds.arizona.edu.
Pediatrics
|June 22, 2018
Summary
Care for Duchenne muscular dystrophy (DMD) has improved, but adherence to recommended standards varies significantly. This study highlights inconsistencies in care delivery for DMD patients, indicating a need for further research to improve outcomes.
Area of Science:
- Neuromuscular Disorders
- Genetics and Gene Therapy
- Clinical Care Standards
Background:
- Duchenne muscular dystrophy (DMD) is a progressive X-linked disorder affecting multiple systems.
- Advancements in DMD management have improved patient survival.
- A lack of standardized care led to the development of consensus-based care considerations.
Purpose of the Study:
- To evaluate adherence to consensus-based care considerations for Duchenne muscular dystrophy (DMD) at selected healthcare sites.
- To identify areas of consistent and inconsistent care delivery in DMD management.
Main Methods:
- Data collected from medical records of males with DMD and Becker muscular dystrophy (BMD) under 21 years old.
- Analysis of healthcare encounters between January 1, 2012, and December 31, 2014.
- Adherence determined by comparing visit/assessment frequency against established care recommendations.
Main Results:
- Adherence to neuromuscular and respiratory clinician visits was 65%.
- Adherence for specific assessments varied widely (16%-84%), with high adherence for forced vital capacity (83%) and cardiologist assessments (≥84%).
- Transition planning documentation was low (31%).
Conclusions:
- Medical record data reveal both alignment and significant inconsistencies with DMD care considerations.
- Critical areas of care show insufficiency, necessitating further investigation.
- More research is required to understand variability and develop reliable outcome measures for DMD care.
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