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

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 a 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. Duchenne muscular dystrophy (DMD) is an X-linked genetic disorder occurring in approximately 1 in 3,500 live male births (Anderson, Head, Rae, & Morley, 2002). Mutations in the dystrophin gene result in the absence of dystrophin or a dysfunctional dystrophin protein, thereb