Résumé :
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Communication n° 111 Purpose : Dystrophinopathy is the first cause of myopathy in children, and Duchenne muscular dystrophy (DMD) is one of the most severe and frequent forms of this disease. In the last years, even if medical cures allowed these children to live longer and to have a better quality of life, today both their families and themselves have to face a lot difficulties due to the kind of pathology. DMD have an hard impact on ill children's life style, psychic and physical development. Some studies investigate the problems that DMD can cause in the child and his/her family; the first symptoms of the disease affecte the children's ability to project their life in space and time, loss of ambulation is the most dramatic moment. In this study we valueted the impact that the DMD has on children and adolescents' quality life. Methods : For this study has been used the Impact of Chilhood Illness Scale (P. Hoare, M. Russel, 1995). It consists of 30 questions witch evaluate four aspects of the child's and his family's life style: illness and its treatment; impact on the child; impact on his/her parents and impact on his/her family. For every question are considered the frequency of the problem and the degree of worry that it produces. We gave the questionnaire to 30 couples of parents' children affected by DMD. Results : All parents compiled the questionnaire. The obtained results showed that developing age subjects, who are affected by DMD, can have behavioural and emotional difficulties that have an affect on children and on his family. Their parents live in continuous stress state because chronic pain and anxiety cause depression, a sense of inadequacy and frustration; as in every chronic physical illness, the sick child and his family are obliged to face a series of physical, behavioural and emotional changes. Conclusion : We may considere the Impact Childood Illness Scale useful for measuring the quality of life in children affected by dystrophynopaty and myopathy.
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