(Adnkronos) - “Le epilessie rare complesse hanno bisogno di essere affrontate in modo integrato. La vera sfida sta nella diagnosi precoce e nell’approccio multidisciplinare in centri di eccellenza che però non sono distribuiti su tutto il territorio nazionale. Bisogna incrementare i Pdta” cioè i Percorsi diagnostico terapeutici assistenziali “che prevedano un’assistenza integrata. Per farlo, occorrono investimenti. Le problematiche economiche si potrebbero risolvere con la moderna telemedicina”. Così Oriano Mecarelli, presidente Fondazione Epilessia Lice, all’incontro ‘Oltre l’Epilessia: le sfide delle epilessie rare e complesse’, che si è svolto a Roma.
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00:00We are talking about rare epilepsy and we are talking about people who, in addition to epilepsy, have a series of other disorders, especially of a psychological, cognitive and even physical type in some cases.
00:24Rare and complex epilepsy therefore fall into the field of encephalopathy and epileptic development, which need to be addressed in an integrated way.
00:38Therefore, a precocious diagnosis is necessary, first of all, which is done fundamentally with genetic study, and then to start a path that is not only therapeutic but also assistential in a sensual way.
00:56It is necessary to organize a multidisciplinary team in which, in addition to the pediatrician, the epileptologist also works, in addition to the psychologist-psychiatrist, the rehabilitation therapist, both the physiotherapist-kinesiotherapist, the logopedist, the psychomotorist, the occupational therapist
01:21and any other type of specialist who addresses the issues of that single case.
01:29Therefore, the challenge is a precocious diagnosis and the implementation of a multidisciplinary team that works in excellence centers.
01:43The problem is that excellence centers are not evenly distributed throughout the national territory, but they are found only, above all, in the north center of our country.
01:57Therefore, it is necessary to organize and implement PDTAs that provide this type of integrated assistance.
02:07Clearly, the period of transition from the pediatric age to the adult age is the crucial moment, the most critical moment.
02:15In general, in the infantile age, the teams that work in the centers of the pediatrician-psychiatrist face the problems of that single subject in an integrated way, in the best of ways.
02:31With the adult age, unfortunately, this no longer happens, in the sense that there is no discussion between the team of the pediatrician-psychiatrist and the adult neurologist.
02:45There is no possibility to relate, at least in Italy.
02:50But I would say that the problem of the transition is a worldwide problem.
02:56Therefore, it is necessary that in the specific PDTAs for the assistance to people with rare epidemics, a team that deals with the transition is organized.
03:11There is a need for investments in structures and in personnel, above all specialized.
03:19And many of the problems, even economic ones, to solve this problem today could be solved by exploiting modern technology, for example telemedicine.
03:32With telemedicine it is possible to organize teleconsultations, tele-rehabilitation, tele-psychology.
03:41And above all, it can be achieved in all territories, thus avoiding what is called sanitary migration, which is the real problem of our country.
03:52Because in the southern regions there are very few centers of excellence that can also deal with the problem of the transition.