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HOME > Epilessia. Medici e pazienti a confronto. L’indagine “Epineeds” in vista della Giornata internazionale dell’11 febbraio
Epilessia. Medici e pazienti a confronto. L’indagine “Epineeds” in vista della Giornata internazionale dell’11 febbraio
"Per i pazienti, le priorità sono la scoperta della causa delle crisi (89% dei casi), l’uso di un farmaco efficace (98.7%), l’uso di un farmaco privo di effetti collaterali cronici (94%) e una vita senza restrizioni (90%), mentre per i medici al primo posto c'è la scelta di un farmaco efficace (83,5%) e senza effetti collaterali cronici (87%). Queste e altre differenze nell'indagine che per la prima volta ha messo a confronto le diverse "sensibilità" di pazienti e medici di fronte alla malattia."
"Oltre il 90% delle persone con epilessia e l’84% dei medici - si legge nella nota della Lice - ritengono che l’individuazione di una terapia efficace e l’assunzione di un farmaco privo di effetti collaterali e facilmente maneggevole siano gli aspetti più importanti nella gestione di questa impattante condizione neurologica".
Dalle conclusioni dello studio emerge che in In Italia "i bisogni e le priorità delle persone con epilessia sono in larga parte soddisfatte quando il paziente afferisce ad un centro per l’epilessia".
Tuttavia, mentre l’attenzione del medico è principalmente diretta verso gli aspetti clinici della malattia, i pazienti sono più interessati alle cause e agli effetti delle crisi sulle attività quotidiane. "I pazienti prestano invece minore attenzione agli specifici effetti collaterali dei farmaci antiepilettici, forse perché poco informati dai curanti. Inoltre, il livello di soddisfazione, elevato per il rapporto personale con il curante, è spesso parziale nei confronti della struttura sanitaria, con riferimento alla gestione degli appuntamenti e delle emergenze".
Pertanto, mentre il rapporto medico-paziente è soddisfacente nella maggior parte dei casi, "l’informazione su temi di maggiore interesse per quest’ultimo non è sempre ottimale e alcuni servizi offerti dal Sistema sanitario nazionale devono essere migliorati per garantire una assistenza efficiente ed omnicomprensiva".
Lo studio
"La diagnosi e la terapia dell’epilessia nella pratica clinica corrente sono effettuate sulla base di criteri che riflettono i risultati delle ricerche passate e recenti combinati con l’esperienza personale del medico curante, che non coincidono sempre con le aspettative del paziente, il quale attende risposte che esprimono bisogni talora diversi. Il soddisfacimento di questi bisogni è possibile solo attraverso una adeguata comunicazione e il rispetto di esigenze che possono differire dalle aspettative del medico. In letteratura vi sono pochi dati precisi sulla corrispondenza tra i bisogni espressi dal paziente con epilessia e il loro soddisfacimento da parte del curante".
Scopi e metodologia della ricerca
"Lo studio ha inteso indagare le aspettative ed il grado di soddisfazione per le cure ricevute dalle varie tipologie di pazienti nelle realtà assistenziali rappresentate dai centri per l’epilessia. L’interesse si è rivolto anche al medico, indagando e mettendo a confronto le visioni che intercorrono tra paziente e medico. La soddisfazione del paziente nel ricevere le cure mediche è una componente integrante ed essenziale nella valutazione della sua qualità di vita e un importante indicatore nella valutazione dei servizi sanitari erogati.
Lo studio è una ricerca multicentrica indipendente, libera da interessi commerciali. Sono stati coinvolti 21 centri per l'epilessia distribuiti su tutto il territorio nazionale. Il campione comprende 787 pazienti (432 donne e 355 uomini) in età compresa tra 15 e 88 anni".
Risultati
"Per i pazienti, le priorità comprendevano la scoperta della causa delle crisi (89% dei casi), l’uso di un farmaco efficace (98.7%), l’uso di un farmaco privo di effetti collaterali cronici (94%) e una vita senza restrizioni (90%) mentre le priorità dei medici comprendevano la scelta di un farmaco efficace (83,5%) e senza effetti collaterali cronici (87%). Tutti gli effetti collaterali investigati sono stati ritenuti più importanti per il medico che per il paziente. Di fronte ad un nuovo farmaco, le priorità del medico e del paziente coincidevano, fatta eccezione per il tempo di raggiungimento della dose efficace, giudicato più importante per il paziente che per il medico (73% vs. 57%).
I pazienti tendevano a concordare coi rispettivi medici curanti soprattutto sulla scelta del farmaco più efficace e meglio tollerato. L’accordo era invece minore sugli effetti collaterali dei farmaci. Con riferimento alla presentazione di un nuovo farmaco antiepilettico, sia il paziente che il medico si aspettano che il farmaco eserciti un buon controllo delle crisi senza incremento degli effetti collaterali. Minore accordo è stato osservato sul rischio di peggioramento delle crisi e sul tempo di raggiungimento della dose efficace, considerati di maggiore importanza per il paziente.
Le relazioni tra medico e paziente sono risultate buone o ottime nella maggior parte dei casi, così come l’apprezzamento per i servizi erogati, giudicati soddisfacenti con l’esclusione, in parte, della gestione degli appuntamenti e delle emergenze".
“Questa indagine rappresenta un ulteriore passo avanti nel miglioramento della gestione dell’epilessia - ha affermato il Prof. Oriano Mecarelli, Presidente LICE -. Epineeds fornisce infatti un quadro chiaro delle aspettative del paziente che possono essere soddisfatte solo attraverso un rapporto medico-paziente sempre più consolidato".
"La Giornata Internazionale dell’Epilessia - ha aggiunto Rosa Cervellione, Presidente FIE - è l’occasione giusta per ricordare la necessità di interventi legislativi volti a tutelare il diritto alle cure e all’assistenza socio-sanitaria delle persone con epilessia e ad impedirne la discriminazione in ogni ambiente, dalla scuola al lavoro, dallo sport fino alla partecipazione attiva e sociale”.
"È proprio per superare i pregiudizi che anche quest’anno sono previste numerose iniziative su tutto il territorio. Per tenere alta l’attenzione dell’opinione pubblica, inoltre, numerosi monumenti storici d’Italia si coloreranno simbolicamente di viola in favore della sensibilizzazione sull’epilessia, malattia che solo in Italia colpisce oltre 500.000 persone, con circa 36.000 nuovi casi l’anno, e che nel mondo fa registrare circa 65 milioni di casi. L’iniziativa - conclude la nota - ha come obiettivo quello di accendere una 'luce speciale' contro le false credenze e contro lo stigma".
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Articolo scritto su www.quotidianosanita.it
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