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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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Psychological test usage in duchenne muscular dystrophy: An EU multi-centre study.
Pien Weerkamp1, Daniela Chieffo2, Philippe Collin3
1Kempenhaeghe Centre for Neurological Learning Disabilities, Heeze, the Netherlands; Maastricht University, School for Mental Health and Neuroscience, Maastricht, the Netherlands.
Summary
Brain comorbidities in Duchenne muscular dystrophy are increasingly studied. This research found varied assessment tools and diagnoses across European clinics, highlighting the need for standardized procedures for better clinical practice and research.
Area of Science:
- Neurology
- Genetics
- Pediatrics
Background:
- Brain-related comorbidities in Duchenne muscular dystrophy (DMD) are gaining attention.
- Systematic assessment of cognition, behavior, and learning is crucial for DMD patients.
Purpose of the Study:
- To describe current assessment instruments and diagnoses used in European neuromuscular clinics for DMD.
- To inventory tools for cognition, behavior, and academic functioning across different age groups.
Main Methods:
- A Delphi-based procedure was employed.
- Questionnaires were sent to psychologists in five European clinics participating in the Brain Involvement In Dystrophinopathy (BIND) study.
- Instruments and diagnoses were inventoried for cognitive, behavioral, and academic domains in pediatric and adult age groups.
Main Results:
- Significant diversity in assessment tools and diagnostic practices was observed across the five centers.
- While Wechsler scales show consensus for intelligence testing, other domains like memory, attention, and behavior utilize varied instruments.
- Heterogeneity exists across different age groups and functional domains.
Conclusions:
- The wide variation in tests and diagnoses necessitates the development of a Standard Operating Procedure (SOP).
- An SOP would enhance clinical practice and facilitate comparative scientific research across countries.
- Standardization is key to improving the management and understanding of brain comorbidities in DMD.
