Résumé :
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The introduction of timely home mechanical ventilation (HMV) in DMD has been associated with increased life expectancy. In our centre, there is currently no specialist respiratory involvement in the paediatric service. We hypothesised that respiratory review and intervention during adolescence would reduce the number of respiratory crises and length of hospital stay (LOS). We retrospectively analysed the data from medical records on all children and young adult DMD patients during a twelve month period. We identified 39 patients currently under follow up with an age range of 14-36 years. Analysis of these data was focused on the primary respiratory crisis admission requiring ventilatory support. 23 of the 39 patients had full dataset reporting the crisis admission. The remaining 16 either had the respiratory crisis in their local hospital or had not experienced a respiratory crisis. Data are shown in the table below Out of the 39 patients reviewed, 16 were admitted to our unit prior to having a respiratory review. 2 had been referred but not reviewed prior to crisis and the remaining 14 had not been referred to the unit; 57% of these were from external hospitals. These data lend support for the need for specialist respiratory review before the 1st respiratory crisis as this timely intervention appears to reduce the severity of the crisis. Therefore, we have adopted a transitional care model from paediatric to adult services with our institution and we hypothesise that this will improve outcome further. This project has been supported by the Guy's & St Thomas' Charity (Project Code : G080109)
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