(Adnkronos) - "Il passaggio dall'età pediatrica all'età adulta dei pazienti con Sindrome di Lennox-Gastaut è definito ‘di transizione’ e prevede il passaggio di consegne dalla cura in ambiente pediatrico a quello in ambiente adulto di pazienti molto complessi. Ci sarebbe bisogno di percorsi istituzionalizzati in cui la transizione segue un percorso che inizia nell'adolescenza, intorno ai 14-15 anni, con visite in ambulatorio in presenza del neuropsichiatra infantile, del neurologo e di altre figure professionali come lo psichiatra, il fisiatra, ma anche l'assistente sociale e lo psicologo”. Così Antonietta Coppola, coordinatrice centro Epilessia del dipartimento di Neuroscienze, scienze riproduttive ed odontostomatologiche dell’Aou Federico II di Napoli, alla conferenza stampa organizzata da Ucb per annunciare il via libera di Aifa alla rimborsabilità di fenfluramina per il trattamento della sindrome di Lennox - Gastaut, una grave encefalopatia epilettica e dello sviluppo che insorge in età pediatrica e colpisce circa un milione di persone in tutto il mondo.
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00:00The transition from the paediatric age to the adult age is a transition that we define
00:08as a transition that involves the transition of delivery of care from the paediatric environment
00:14to the adult environment of these patients, who are very complex patients.
00:18Unfortunately, this transition is not absolutely simple, especially because in Italy, but
00:23actually also abroad, there are no structured paths that allow this transition,
00:28if not actually anecdotal, or maybe in reference centers, in level centers.
00:33And this step is made even more difficult by the fact that while in the paediatric age
00:38there is the figure of the child neuropsychiatrist, who, by training, is able to cure both
00:43epileptic crises, cognitive disabilities and behavioral problems,
00:49in the adult age this does not happen, because the neurologist, in fact, has a training
00:53to cure epileptic crises, cognitive disabilities and rehabilitation, but very often when
01:00behavioral problems are important, he needs, for example, a colleague psychiatrist
01:05who can support him.
01:06Unfortunately, there is no network for which, in the same environment where we see these
01:11patients, we have available the psychiatrist, the physiatrist, the food specialist.
01:17So, this possibility of building the network is demanded to the neurologist himself, who
01:21maybe with, let's say, personal knowledge, but also with a will, not little, is able
01:28to build this network of professional colleagues who take care of the patient to have
01:33an approach, let's say holistic, which sees at 360 degrees what a syndrome is.
01:38Syndrome, in fact, means that there is not only one symptom, but there are many symptoms
01:43and in considering the patient, we must absolutely consider them all.
01:47There would be a need for institutionalized paths, in which the transition follows a path
01:54that certainly cannot be carried out in a single moment, in a single day, but for example
02:00with structured ambulatories that start in adolescence, around 14-15 years old,
02:05they provide the ambulatory together with visits, with the presence of the child neuropsychiatrist,
02:11the neurologist and other professional figures, such as the psychiatrist, the physiatrist,
02:15but also the social worker, in some cases the psychologist is very important, and slowly
02:20accompany the patient to move towards what is the environment of the adult,
02:25so that he does not find himself in an environment where he is unknown, where he does not feel
02:30welcomed, where he does not feel understood and where clearly what is the risk is that he returns,
02:35he takes a step back to return to the pediatric environment.