New tool helps manage neurobehavioral difficulties • healthcare-in-europe.com

Overview of the DuMAND conceptualization. It includes five categories in which patients with Duchenne muscular dystrophy (DMD) may experience problems: cognition and learning, social responsiveness, emotion regulation, externalizing behavior, and eating and sleeping problems. This framework resulted from parent and expert feedback and guided the creation of the 43-item DuMAND Checklist.

Professor De Waele and neuropsychologist and first author Sam Geuens, PhD, Department of Paediatrics, University Hospitals Leuven and Department of Development and Regeneration, KU Leuven, Leuven, Belgium, comment: “Although doctors often look into these issues, we found that mostly they rely on their own experience or their own experience due to the absence of a specific guidance tool. Our study highlights the complex and diverse nature of neurobehavioral difficulties in DMD and the challenge of addressing them in clinical practice. Our findings underscore the urgent need for international collaboration in developing unified protocols that improve the quality of care for individuals and their families struggling with the complex behavioral dimensions of DMD.”

To address this gap, researchers have developed a screening tool for neurobehavioral difficulties in DMD and report a pilot study of 20 patients with the same problem. Known as the Checklist of Neurobehavioral Difficulties Associated with Duchenne Muscular Dystrophy (DuMAND), this tool aims to comprehensively cover the spectrum of neurobehavioral problems in patients with DMD, including behavior, psychiatric disorders, and various cognitive, academic, and psychosocial deficits.

The DuMAND categories were derived through literature review and feedback from 85 parents (48 mothers and 37 fathers) and 28 subject matter experts. Dr. Geuens explains, “During the development of this tool, we identified behaviors frequently reported by the literature, parents, and DMD experts as particularly challenging in DMD patients. The DuMAND concept builds on this feedback and encompasses the spectrum of neurobehavioral difficulties seen in DMD.”