Screening cognitive and academic problems in Duchenne Muscular Dystrophy: Validity and reliability of the Kempenhaeghe Learning Questionnaire

Background: Duchenne Muscular Dystrophy (DMD) patients are at an increased risk for cognitive and academic difficulties. However, a comprehensive tool to measure DMD-specific learning and academic functioning has been lacking. To address this, we developed the Kempenhaeghe Learning Questionnaire (KLQ) Objective: This study aims to evaluate the reliability and validity of the KLQ in a large sample of individuals with DMD ( n = 271, mean age 10, standard deviation 3) across five European countries. Methods: The KLQ is a 20-item proxy-report questionnaire based on existing instruments, designed to screen for problems in four cognitive and academic areas in DMD: Reading, Arithmetic, Memory/Attention, and Executive Functioning. Data analysis involved a principal component analysis to identify the KLQ's factor structure and a confirmatory factor analysis to verify this structure. Reliability and validity were assessed to determine the psychometric quality. Results: Factor analyses revealed four distinct but correlated dimensions of cognitive functioning and academic challenges in DMD, confirming a robust four-factor model for the KLQ. The questionnaire demonstrated good psychometric quality. Conclusions: The findings suggest that the KLQ is a useful and clinically informative, brief parent-report tool that can help clinicians identify DMD-specific key cognitive and academic challenges, with a specific focus on school-related areas such as reading, arithmetic, memory, attention, and executive functioning. While this targeted scope limits its use for assessing broader aspects of cognition, it can provide valuable insights in taking care decisions, including determining whether specialised (neuro)psychological assessment is warranted.