The aim of this thesis is to analyze the different paths of access to care and subsidies for ALS patients in Italy and propose a new model that can overcome the limitations of the current system. In the first chapter it was described how the increase of life expectancy has led to the onset of several new diseases and conditions characterizing the more advanced stages of life. Among these, Amyotrophic Lateral Sclerosis (ALS) has been the object of study in this thesis, paying particular attention to the socio-economic aspects of the disease and the needs of the patient. The second chapter dealt with the same analysis yet reporting the situation and condition of ALS patients and severely disabled people in different European countries and the world. In particular, the examples of some countries with a significant geopolitical weight and Denmark were reported. The latter uses a system for taking charge, monitoring and managing the patient strongly focused on digitization that will be taken as a reference model to propose a new path of access to care in Italy. In the third chapter, the subsidies and procedures for access to care and support in nine Italian Regions and in the Autonomous Province of Bolzano were reported in detail. The aim of this study was to underline the heterogeneity of the situation in Italy, underlining how different Regions offer different services and subsidies in nature and quality. In the fourth chapter, modelling of the systems present on the Italian territory was presented. The models have been created based on the similarities found between regions that are able to guarantee, albeit through different paths, comparable levels of service and assistance to their residents. Subsequently, an alternative model was proposed, inspired by the Danish system, to revolutionize and overcome the current state-citizen relationship.
Obiettivo di questa tesi è analizzare i diversi percorsi d’accesso alle cure ed ai sussidi per i malati SLA in Italia, e proporre un modello, ispirato al sistema della Danimarca, che possa superare limiti e problematiche attualmente riscontrabili in Italia. Nel primo capitolo è descritto come l’evolversi dell’aspettativa di vita abbia comportato l’insorgere di diverse nuove malattie e condizioni, in particolare per gli stadi più avanzati d’età. Tra queste vi è la Sclerosi Laterale Amiotrofica (SLA), principale oggetto del lavoro di questa tesi, studiata prestando particolare attenzione all’aspetto socioeconomico della malattia ed alle esigenze del malato. Nel secondo capitolo si focalizza l’obiettivo sulla condizione dei malati di SLA e disabili gravissimi in diversi Paesi europei e del mondo, fra cui alcuni caratterizzati anche da rilevanti posizioni geopolitiche come Germania, USA, Russia e Cina. Particolare attenzione è stata rivolta alla Danimarca che, sebbene meno influente a livello generale, adotta un sistema per la presa in carico, monitoraggio e gestione del paziente fortemente incentrata sulla digitalizzazione: verrà presa come modello di riferimento per la proposta di un nuovo percorso d’accesso alle cure in Italia. Nel terzo capitolo sono stati riportati nel dettaglio sussidi ed iter d’accesso a cure e supporti in nove Regioni italiane e nella Provincia autonoma di Bolzano. Il fine di tale studio è stato quello di evidenziare l’eterogeneità della situazione in Italia, sottolineando le diversità in termini di organizzazione, servizi e sussidi per natura e qualità. Nel quarto capitolo sono state presentate delle modellizzazioni dei sistemi presenti sul territorio italiano. I modelli sono stati creati in base alle similitudini riscontrabili tra quelle Regioni che riescono a garantire, seppur tramite percorsi diversi, livelli comparabili di servizio ed assistenza ai propri residenti. Infine, è stato proposto un modello alternativo per rivoluzionare e superare l’attuale rapporto Stato-cittadino, con la possibilità di integrare le informazioni disponibili con le opinioni ed integrazioni ottenibili dai soggetti destinatari di tali sussidi e benefici
Differenze regionali nei percorsi di cura e di supporto per i soggetti affetti da SLA. Una proposta dal punto di vista del malato
BROCCA, FABRIZIO
2021/2022
Abstract
The aim of this thesis is to analyze the different paths of access to care and subsidies for ALS patients in Italy and propose a new model that can overcome the limitations of the current system. In the first chapter it was described how the increase of life expectancy has led to the onset of several new diseases and conditions characterizing the more advanced stages of life. Among these, Amyotrophic Lateral Sclerosis (ALS) has been the object of study in this thesis, paying particular attention to the socio-economic aspects of the disease and the needs of the patient. The second chapter dealt with the same analysis yet reporting the situation and condition of ALS patients and severely disabled people in different European countries and the world. In particular, the examples of some countries with a significant geopolitical weight and Denmark were reported. The latter uses a system for taking charge, monitoring and managing the patient strongly focused on digitization that will be taken as a reference model to propose a new path of access to care in Italy. In the third chapter, the subsidies and procedures for access to care and support in nine Italian Regions and in the Autonomous Province of Bolzano were reported in detail. The aim of this study was to underline the heterogeneity of the situation in Italy, underlining how different Regions offer different services and subsidies in nature and quality. In the fourth chapter, modelling of the systems present on the Italian territory was presented. The models have been created based on the similarities found between regions that are able to guarantee, albeit through different paths, comparable levels of service and assistance to their residents. Subsequently, an alternative model was proposed, inspired by the Danish system, to revolutionize and overcome the current state-citizen relationship.| File | Dimensione | Formato | |
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https://hdl.handle.net/10589/187643