Malattie rare, Ghio (iPHnet): “Consegna farmaci a domicilio migliora qualità di vita”

adnkronos

(Adnkronos) - “L’ipertensione arteriosa polmonare è una malattia rara, quindi poco conosciuta dai medici. Esistono centri specializzati per questa malattia, ma può capitare che siano lontano dal domicilio del paziente. Da tempo esiste un servizio di assistenza infermieristica al domicilio h24, ma da oggi si aggiunge anche la consegna a domicilio per alcuni farmaci altrimenti disponibili solo in ospedale. Un passo importante che si traduce in minor carico logistico per il paziente, maggiore aderenza alla terapia e migliore qualità di vita”. Lo ha detto all’Adnkronos Salute Stefano Ghio, presidente di iPHnet - Italian pulmonary hypertension network, intervistato alla conferenza stampa ‘Malattie rare.Terapia su misura e home delivery: come cambia l’approccio all’Ipertensione Arteriosa Polmonare’, organizzata a Palazzo dell’Informazione a Roma.

Transcript

00:00Hypertension is a rare disease.

00:07This means that it is not well known by doctors.

00:12This is the first problem.

00:14The patient with this disease, when he has problems,

00:17it does not make sense for him to go to the doctor of general medicine

00:20or to the hospital cardiologist who is very close to home

00:25if he is not part of a center of reference for pulmonary hypertension.

00:31It is true that there are many centers that are experts in this disease in Italy,

00:38but they are all on average far from home.

00:42In a good sense, the assistance continuity, hospital-territory,

00:47which is something that is often talked about,

00:50which should be the goal of a good public health near the patient,

00:54is declined for this disease in a completely different way

00:59compared to many other more common pathologies.

01:01For patients affected by this disease,

01:05there is already a home H24 nursing service.

01:10This is essential because the patient in this way feels safe

01:14when the infusion site changes, when the needle changes.

01:18This important step is added, from today it is delivered at home,

01:22because these drugs are not found in pharmacies,

01:25but must be taken to the hospital.

01:28The delivery at home is therefore a further step forward

01:31towards a lower organizational and logistical load for the patient,

01:35a better adherence to therapy and, in the last analysis,

01:38an improvement in quality of life.

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