A pilot study using a new screening tool shows promise for assessing neurobehavioral difficulties in children with Duchenne muscular dystrophy (DMD) and improving quality of life for patients and their families. appear in the . Lead investigator Liesbeth De Waele, MD, Ph.
D., Department of Pediatrics, University Hospitals Leuven, and Department of Development and Regeneration, KU Leuven, Leuven, Belgium, explains, "Many patients with DMD also suffer from neurobehavioral difficulties that can significantly impact their quality of life and that of their families. "The pathophysiological mechanisms behind these neurobehavioral difficulties are still poorly understood, and in these aspects of the disease receive less attention than the physical symptoms.
Despite growing awareness, many patients still lack easy access to behavioral specialists such as psychologists." The research team first investigated how these neurobehavioral difficulties are managed in various centers worldwide. Twenty-eight respondents from 16 countries completed an online survey.
Only 35% of the centers systematically screened for neurobehavioral difficulties in their DMD population. Predominant screening methods included history taking and clinical observation. Common neurobehavioral difficulties encompassed learning challenges, dependency from adults, anxiety, concentration difficulties, and social deficits.
The participating centers frequently employed parental counseling and liaison with psychosocial heal.