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Journal of Pediatric Psychology Advance Access originally published online on July 22, 2008
Journal of Pediatric Psychology 2009 34(1):69-78; doi:10.1093/jpepsy/jsn067
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© The Author 2008. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oxfordjournals.org

Psychosocial Adjustment in Males with Duchenne Muscular Dystrophy: Psychometric Properties and Clinical Utility of a Parent-report Questionnaire

Jos G. M. Hendriksen, PhD1,2,3, James T. Poysky, PhD4, Debby G. M. Schrans, MSc1,2, Eric G. W. Schouten, PhD5, Albert P. Aldenkamp, PhD1,3 and Johan S. H. Vles, PhD, MD3

1Kempenhaeghe Epilepsy Centre, Heeze, 2Franciscusoord, Childhood Rehabilitation Centre, SRL, Valkenburg, 3Department of Neurology, University Hospital Maastricht, 4Baylor College of Medicine, Texas Children's Hospital and 5Department of Psychology, Maastricht University

All correspondence concerning this article should be addressed to Jos G. M. Hendriksen, Kempenhaeghe Epilepsy Centre, Department of Behavioral Sciences, P.O. Box 61, 5590 AB Heeze, The Netherlands. E-mail: hendriksenj{at}kempenhaeghe.nl


  Abstract

Objective The primary aim of this study was to establish the psychometric properties and clinical utility of the Personal Adjustment and Role Skills Scale (PARS-III) for assessing psychosocial adjustment in males with Duchenne muscular dystrophy (DMD). Methods The parents of 287 male patients with DMD aged 5–18 years completed the PARS-III and Revised Rutter Scale. Results The {alpha} coefficients and factor analysis indicated good reliability and validity. Overall psychosocial adjustment was not significantly different in DMD compared to males with other chronic medical conditions and was positively associated with increases in age. A clinical cutoff score for screening in the DMD population is also reported. Conclusions The PARS-III is a reliable and valid index of youth psychosocial adjustment in DMD and can be used for both clinical screening and research purposes.

Key words: Duchenne muscular dystrophy; psychosocial adjustment; questionnaire study.

Received May 1, 2007; revision received May 31, 2008; accepted June 2, 2008


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