Promoting Health in Adolescents with Muscular Dystrophy

The objectives of the proposed research are: 1) to assess variation in the use and duration of use of assistive technology (AT) devices in a population of boys with Duchenne and Becker Muscular Dystrophy (DBMD) and 2) to investigate the effects of AT devices on the promotion of health, well-being, and quality of life. AT includes devices that enable a person with a disability to be more productive and independent in daily activities. The study will use existing data in medical and school records and data gathered from standardized questionnaires completed by subjects and their parents. Eighty boys with DBMD ages 5-21 years will be recruited from a population-based study funded by the Centers for Disease Control and Prevention (CDC) to investigate the prevalence of DBMD in Arizona and study health outcomes on a population basis. The research partners for the project will include the Arizona Technology Access Program, the state’s Assistive Technology Act project, located in the Institute for Human Development at Northern Arizona University; the Children’s Rehabilitative Services (CRS) program in the Office of Children with Special Health Care Needs (OCSHCN) at the Arizona Department of Health Services; the CRS-funded regional centers for the provision of services to the CSHCN population; the Muscular Dystrophy Association clinics; and other health care facilities that serve individuals with DBMD and their families.