Transition to adulthood in people with dystrophy: social cognition mechanisms, psychosocial adjustment, and mental health and coping strategies

In Duchenne muscular dystrophy (DMD) and sarcoglycanopathies (SG, the constant assistance in terms of medical, physical and emotional care and the gradually increasing increasing dependency on others represent a potential stressor that patients and their families need to cope with and adapt to. Preliminary intervention programs aimed at improving the multidisciplinary care in the late stages of the disease have been suggested, but little is known and done in the mental sphere. This project is thus aimed to: 1) explore psychosocial adjustment, coping capabilities and mental health in a large population of young adults with DMD and SG living in Italy, through the involvement of 16 tertiary centers for neuromuscular disorders and one psychology unit of the University of Milano; 2) identify correlations between mental health and clinical indicators (cardiac and respiratory function, motor function, nutritional status and gastrointestinal disorders); 3) identify strengths and weaknesses in psychosocial adjustment and define possible interventions for improving the physical and psychosocial functioning and quality of life of adults with DMD and SGC and their families