Psychosocial adjustment in adults with Duchenne muscular dystrophy: A pilot study on a shortened parent-report questionnaire

The primary aim of this study was to describe the psychometric properties of an adult revision of the 28 item Personal Adjustment and Role Skills Scale (PARS-III). This scale was originally developed to assess psychosocial adjustment in children 4-18 years of age and has been applied in boys with Duchenne muscular dystrophy (DMD) and was found to be reliable and valid. Within the context of a longer lifespan in dystrophinopathies there is a growing need to assess psychosocial adjustment in an adult population. The original 28 items questionnaire was administered to parents of 90 adult men with DMD. The items of the PARS-III were rated by three experts, one parent, and one adult with DMD to indicate appropriateness of the items. For 22 items, there was consensus among the raters. Results of the Confirmatory Factor Analysis show an acceptable fit and closely resembles the original factor structure of the PARS-III, thereby justifying the use of the previously identified six subscales of psychosocial adjustment. In conclusion, the current 22 item PARS-Adult is a valuable, reliable, and valid screening of psychosocial adjustment in adult DMD patients. With this tool, continuity of assessment and follow up can be guaranteed in this clinical population.