(Adnkronos) - “E’ uno studio molto innovativo perché ha consentito di reclutare tanti pazienti in modo spontaneo, utilizzando un'app sullo smartphone, che li seguiva nel tempo e in cui loro dovevano raccontare le loro caratteristiche cliniche, le terapie, i problemi che c’erano, inclusi anche quelli psicologici e lavorativi. Il tutto in totale anonimato”. Così Renato Mantegazza, presidente Aim, Associazione italiana miastenia e malattie immunodegenerative - Amici del Besta Odv, all’incontro organizzato a Milano da Argenx per presentare i risultati del primo studio in real world su scala globale sull’impatto sociale e produttivo della Miastenia grave.
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00:00A few years ago, a study was carried out, which started directly from the associations of patients,
00:11which involved associations at the European level, at the North American level, Canada and Japan.
00:19Data were collected relating to 2,000 patients.
00:24Italy had a very large participation, it was very spontaneous, it was enough to put it on the website of our association.
00:35This was a very innovative study because it allowed to recruit so many patients in a spontaneous way,
00:48using an app on a smartphone that tracked them over time.
00:55They had to tell their clinical characteristics, therapies, the problems they had,
01:05including psychological and occupational ones, all in total anonymity.
01:17So what came out is that the work that is presented to me today,
01:22is that in reality this disease has a very significant impact on the daily life of patients,
01:30that about 36%, maybe a little more, of patients have to reduce their work activities,
01:45therefore with a consequent economic loss.
01:48And the other aspect is that there is also a large involvement of caregivers,
01:58which are usually 95% family members,
02:02so the economic losses of both patients and caregivers are added up,
02:10which must reduce, in a large percentage of cases, the working hours.
02:18It was estimated that in Italy we had a total reduction of 11,000 euros per year per family,
02:29and that the vast majority of this loss is linked to a net loss of the patient and then also of the caregivers.
02:39Another really interesting thing is that the use of one of the innovative drugs
02:48has reduced this situation in a considerable percentage,
02:55so 40% of them have been able to improve their living conditions.
03:03The other needs are greater care of the patient from an insurance point of view,
03:11at the workplace.
03:13I was telling the patient who is here that she has to take non-returned permits
03:26to be able to take exams, check and all that.
03:31The other very important point is that these patients often have depressive problems,
03:47so greater care should be given to manage these aspects.
03:59Finally, there is a problem linked to the fact that the patients must have a very early diagnosis,
04:15which can be very difficult because the doctors of general medicine do not know enough,
04:25and I do not think it is possible for them to know all the rare diseases,
04:30but conditions must be created so that they know how and where to actually address the patients.