Screening cognitive and academic problems in Duchenne Muscular Dystrophy: Validity and reliability of the Kempenhaeghe Learning Questionnaire
Lay Summary
Duchenne muscular dystrophy (DMD) is a genetic condition that primarily affects muscles, but it can also impact the brain. Many children and young people with DMD experience difficulties at school, including challenges with reading, mathematics, memory, attention, and planning or organizing tasks. These learning and academic difficulties are common, but they are not always picked up early or assessed in a structured way.
This study tested a new questionnaire called the Kempenhaeghe Learning Questionnaire (KLQ), designed to help identify these school-related difficulties in people with DMD. The questionnaire is completed by parents or caregivers and includes 20 questions covering key areas such as reading ability, arithmetic skills, memory and attention, and executive functioning (skills needed for planning and problem-solving). The tool was tested in 271 individuals with DMD from five European countries, showing that it is reliable and measures four clear areas of learning and cognitive functioning.
The results show that the KLQ is a practical and useful screening tool that can help clinicians and families quickly understand whether a child or young person with DMD may be struggling in specific academic areas. While it is not a full cognitive assessment, it can help guide decisions about whether more detailed neuropsychological testing or additional educational support is needed, supporting earlier and more targeted help in school and daily life.