Screening cognitive and academic problems in Duchenne Muscular Dystrophy: Validity and reliability of the Kempenhaeghe Learning Questionnaire
Journal of Neuromuscular Diseases, pp. 22143602261433149
Abstract
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.
Authors 16
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Maastricht University · Kempenhaeghe
Affiliation as printed
Kempenhaeghe Centre for Neurological Learning Disabilities
School for Mental Health and Neuroscience, Maastricht University, Maastricht, The Netherlands
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Universidad Complutense de Madrid
Affiliation as printed
Universidad Complutense de Madrid
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Affiliation as printed
Catholic University
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Affiliation as printed
Newcastle University
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Erik Harmen Niks Aachen
Leiden University · Leiden University Medical Center
Affiliation as printed
Leiden University Medical Centre
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Maastricht University Medical Centre
Affiliation as printed
Maastricht University Medical Centre
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Institut des Maladies Génétiques Imagine
Affiliation as printed
Imagine Institute des maladies genetiques Necker Enfant maladies foundation, Paris, France
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Affiliation as printed
Danish Neuromuscular Centre, Rigshospitalet
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Affiliation as printed
Danish Neuromuscular Centre, Rigshospitalet
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Affiliation as printed
Dubowitz Neuromuscular Centre, UCL Great Ormond Street, Institute of Child Health
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Affiliation as printed
World Duchenne Organization, Veenendaal, The Netherlands
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Affiliation as printed
Dubowitz Neuromuscular Centre, UCL Great Ormond Street, Institute of Child Health
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Affiliation as printed
Dubowitz Neuromuscular Centre, UCL Great Ormond Street, Institute of Child Health
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Affiliation as printed
Catholic University
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Maastricht University Medical Centre · Maastricht University · Kempenhaeghe
Affiliation as printed
Kempenhaeghe Centre for Neurological Learning Disabilities
Maastricht University Medical Centre
School for Mental Health and Neuroscience, Maastricht University, Maastricht, The Netherlands
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Maastricht University · Kempenhaeghe
Affiliation as printed
Kempenhaeghe Centre for Neurological Learning Disabilities
School for Mental Health and Neuroscience, Maastricht University, Maastricht, The Netherlands
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