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J Pediatr Psychol. 2019 Aug 20. pii: jsz062. doi: 10.1093/jpepsy/jsz062. [Epub ahead of print]

Instruments for the Assessment of Behavioral and Psychosocial Functioning in Duchenne and Becker Muscular Dystrophy; a Systematic Review of the Literature.

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Kempenhaeghe Centre for Neurological Learning Disabilities, Heeze, The Netherlands.
Maastricht University, School for Mental Health and Neuroscience, Maastricht, The Netherlands.
Maastricht University Medical Centre, Department of Neurology, Maastricht, The Netherlands.
Duchenne Centre Netherlands.



This systematic review aims to provide an overview of instruments used to assess behavioral and psychosocial functioning of patients with Duchenne and Becker muscular dystrophy, as well as to review the psychometric properties and applicability of these instruments.


Five databases (Embase,, ERIC, Pubmed/Medline, and Cochrane) were searched from inception to June, 2018. Potential articles were rated by two independent reviewers. A predefined PROSPERO form (CRD42017074518) was used to extract data from included articles.


Sixty-one instruments were used in 54 studies. The Child Behavior Checklist is commonly used, but it lacks disease specific psychometric information. Sixteen instruments that contained disease specific psychometric information were included for final evaluation. The results displayed three instruments that are potentially valid for screening of psychosocial problems: The Psychosocial Adjustment and Role Skills Scale 3rd edition, the Pediatric Quality of Life Inventory Generic module, and the Life Satisfaction Index for Adolescents with Duchenne muscular dystrophy. Appropriate instruments for screening of behavioral problems may be: the Strengths and Difficulties Questionnaire, the Generalized Anxiety Disorder-7 item questionnaire, and the Patient Health Questionnaire-9 item questionnaire.


Further research on psychometric properties of screening instruments is crucial to ascertain a gold standard for clinical and research purposes. Meanwhile, for definite diagnostics purposes we recommend a multimethod, multisource, multisetting assessment in this high-risk population.


Duchenne-Becker; behavior; diagnostics; instruments; muscular dystrophy; psychometrics; psychosocial; screening; systematic review


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