Résumé :
|
Body : In patients with DMD with optimal support, the average age of survival is 25 years .With improvements in outcome patients are expected to transfer into adult services. However, transitional care is not an established pathway for DMD. We hypothesised that the transitional needs are currently not being met. We designed a questionnaire as a qualitative assessment of our current neuromuscular service. Questionnaires were returned from 24/39 patients under review by the Lane Fox Respiratory Unit over a 12 month period. The patients recruited were aged between 14 and 36 years. The results are shown below : 42% were extremely or moderately worried about the transition into adult services 63% were told little or nothing by the paediatric team of what to expect during the move into adult services 58% were told little or nothing by the adult team of what to expect following the move into adult services 38% had poor or very poor continuation of care and overlap of services between adult and paediatrics 79% were given little or no preparation for the move into adult services 96% reported it would be helpful to have a specific person to provide advice for management of medical crisis 100% reported it would be helpful to have an identified person to link paediatric and adult services. These data show that DMD patients are concerned about the period of transition into adult services and do not receive enough information about the process or the teams. Although >75% of patients perceived that they were given minimal preparation for transition, all the patients expressed a specialist link between the services would be useful. This would be facilitated by a transitional care co-ordinator.
|