title: [Principles of multidisciplinary management of Duchenne muscular dystrophy].
abstract: Given the gradual progression observed in Duchenne muscular dystrophy, organization of care in multidisciplinary consultations is essential for optimal management of the different aspects of the disease. Drawing up a care plan is always preceded by a specific consultation for the announcement of the diagnosis with both the parents and the child. Explaining to the child the origin of his problems with simple words, telling him that why he experienced a particular symptom has been understood, is a fundamental step. The child needs to receive the information at different times of the disease following the rhythms of the disease stages, with an appropriate lead time. With the progress achieved in managing this disease, more than 90% of these children now live into adulthood. The switch from pediatric consultations to adult consultations, marking the transition from childhood management at adulthood, is a major challenge in the organization of care. Although today death occurs most often in adulthood, some children die in childhood. For the majority of teams who care for children, whatever the initial pathology may be, the notion of care continuity and accompaniment from the announcement of the disease to the terminal phase is essential. Increasing numbers of therapeutic trials have been developed over the past few years aiming to investigate children with DMD. However, they must not neglect the overall management of these patients and provide the best accompaniment possible.
authors.affiliation: Centre de référence des maladies neuromusculaires de l'enfant, Hôpital d'Enfants, CHU Timone, 13385 Marseille cedex 5. Electronic address: bchabrol@ap-hm.fr.
authors.forename: B
authors.initials: B
authors.lastname: Chabrol
authors.affiliation: Centre de référence des maladies neuromusculaires de l'EST parisien, Hôpital Armand Trousseau, 26 avenue du Dr Arnold Netter, 75571 Paris cedex 12.
authors.forename: M
authors.initials: M
authors.lastname: Mayer
mesh_terms: D002648:Child; D006801:Humans; D020388:Muscular Dystrophy, Duchenne / Q000628:therapy*; D010348:Patient Care Team