This thesis is based on the definition of non-pharmacological and evidence-based recommendations for the mental well-being of the cancer patient, in the European project CAPABLE. CAPABLE aims at building a coaching system to support the oncologic patient during the home management of the disease, both from the clinical and mental well-being point of view. In this paper, aspects related to the patient's quality of life and wellness are treated, and capsules are the main tools designed to support the user in this aspect. Capsules are exercises that the patient has to perform continuously and that contain short instructions for non-pharmacological evidence-based interventions. During the development of this thesis project, the inventory of the various capsules has been created, mainly performing a literature review, and designing exercises that seemed to fit most in the world of applications. Furthermore, the capsules and the patient-capsule interaction were modeled in an ontology (using software called Protégé) which will serve as an essential part of the knowledge base for the entire project. During this modeling, accurate patient profiling was also carried out, leading the foundations to be able, in the near future of CAPABLE, to customize the capsules according to user preferences. The biggest problem encountered was the difficulty of imagining how the application can provide capsules to patients. For this reason, simultaneously on the creation of the ontology, it was necessary to build up a mock-up of the patient's application side, which includes the capsules' part. This tool served to allow the partners involved to be able to touch the experience that CAPABLE wants to give to our patients and, above all, this mock-up has been pivotal as a guide for application designers to build the real application. The prototype was also useful to present the application to the Italian patients participating in the project. For this reason, an Italian version of the mock-up was also created, in order to facilitate a full understanding of the prototype and the objectives of CAPABLE. In parallel, thanks to the help of the AIMAC association, a discussion was carried out on the need to improve hospital clinical workflows for cancer patients. This discussion was based on the comprehension that the patient's care needs to focus not only on the disease but also on the consequences that this disease can have on the patient, mainly psychological and nutritional. From this initial input, in collaboration with psychologists and nutritionists, two flows, parallel to the oncological path, have been designed, aiming at a psychological and nutritional assessment of the patient, and the possible treatment of these aspects, if necessary. The entire thesis project was based on the effort to make a substantial contribution to the development of the application, in such a way as to make CAPABLE a real turning point for the patient's well-being and quality of life.
Un modello di conoscenza per la definizione di raccomandazioni non farmacologiche evidence-based per migliorare il benessere mentale dei pazienti: il caso del progetto CAPABLE. Questa tesi si basa sulla definizione di raccomandazioni non farmacologiche evidence-based per il benessere mentale del malato di cancro, nel progetto europeo CAPABLE. CAPABLE mira a costruire un sistema di coaching per supportare il malato di cancro durante la gestione domiciliare della malattia, sia dal punto di vista clinico che del benessere mentale. In particolare, in questo elaborato vengono trattati gli aspetti relativi alla qualità di vita e al benessere del paziente. Le capsule sono gli strumenti pensati per supportare l'utente sotto questo aspetto. Le capsule sono esercizi che il paziente deve eseguire in maniera continuativa e contengono brevi istruzioni per interventi non farmacologici evidence-based. Durante lo sviluppo del progetto di tesi, è stato creato l'inventario delle varie capsule, eseguendo principalmente un’accurata revisione della letteratura e sviluppando gli esercizi che sembravano adattarsi maggiormente al mondo delle applicazioni. Inoltre, le capsule e l'interazione paziente-capsule sono state modellate in un'ontologia (utilizzando un software chiamato Protégé) che servirà come parte essenziale della base di conoscenza dell'intero progetto. Durante questa modellazione è stata effettuata anche un'accurata profilazione del paziente, che è servita a gettare le basi, nel prossimo futuro di CAPABLE, per poter personalizzare le capsule in base alle preferenze dell’utente. Il problema più grande riscontrato, è stata la difficoltà di immaginare come l'applicazione possa fornire le capsule ai pazienti. Per questo motivo, contemporaneamente alla creazione dell'ontologia, è stato necessario costruire un mock-up del lato applicativo del paziente, in cui è compresa anche la parte delle capsule. Questo strumento è servito per consentire ai partner coinvolti di poter toccare con mano l'esperienza che CAPABLE vuole dare ai nostri pazienti e, soprattutto, questo mock-up si è rivelato una guida che ha permesso ai developer dell’applicazione di costruire il vero design del sistema. Il prototipo è servito anche per presentare l’applicazione ai pazienti italiani che parteciperanno al progetto. Per questa ragione è stata inoltre creata una versione italiana del mock-up, al fine di facilitare una piena comprensione dello strumento e degli obiettivi di CAPABLE. Parallelamente, grazie all'aiuto dell'associazione AIMAC, è stato condotto un processo di discussione sulla necessità di migliorare i flussi di lavoro clinici ospedalieri per il malato di cancro. Questa discussione si è basata sulla comprensione che la cura del paziente ha bisogno di concentrarsi non solo sulla malattia ma anche sulle conseguenze che questa malattia può avere sul paziente, principalmente psicologiche e nutrizionali. Da questo primo input, in collaborazione con psicologi e nutrizionisti, sono stati ideati due flussi, paralleli al percorso oncologico, che mirano alla valutazione psicologica e nutrizionale del paziente, e al possibile trattamento di questi aspetti, se necessario. L'intero progetto di tesi si è basato sul tentativo di dare un contributo sostanziale allo sviluppo dell'applicazione, in modo tale da rendere CAPABLE una vera e propria svolta per il benessere e la qualità della vita del paziente.
A knowledge model for defining non-pharmacological evidence-based recommendations to improve patients’ mental well-being: the case of the CAPABLE project
VEGGIOTTI, NICOLE
2019/2020
Abstract
This thesis is based on the definition of non-pharmacological and evidence-based recommendations for the mental well-being of the cancer patient, in the European project CAPABLE. CAPABLE aims at building a coaching system to support the oncologic patient during the home management of the disease, both from the clinical and mental well-being point of view. In this paper, aspects related to the patient's quality of life and wellness are treated, and capsules are the main tools designed to support the user in this aspect. Capsules are exercises that the patient has to perform continuously and that contain short instructions for non-pharmacological evidence-based interventions. During the development of this thesis project, the inventory of the various capsules has been created, mainly performing a literature review, and designing exercises that seemed to fit most in the world of applications. Furthermore, the capsules and the patient-capsule interaction were modeled in an ontology (using software called Protégé) which will serve as an essential part of the knowledge base for the entire project. During this modeling, accurate patient profiling was also carried out, leading the foundations to be able, in the near future of CAPABLE, to customize the capsules according to user preferences. The biggest problem encountered was the difficulty of imagining how the application can provide capsules to patients. For this reason, simultaneously on the creation of the ontology, it was necessary to build up a mock-up of the patient's application side, which includes the capsules' part. This tool served to allow the partners involved to be able to touch the experience that CAPABLE wants to give to our patients and, above all, this mock-up has been pivotal as a guide for application designers to build the real application. The prototype was also useful to present the application to the Italian patients participating in the project. For this reason, an Italian version of the mock-up was also created, in order to facilitate a full understanding of the prototype and the objectives of CAPABLE. In parallel, thanks to the help of the AIMAC association, a discussion was carried out on the need to improve hospital clinical workflows for cancer patients. This discussion was based on the comprehension that the patient's care needs to focus not only on the disease but also on the consequences that this disease can have on the patient, mainly psychological and nutritional. From this initial input, in collaboration with psychologists and nutritionists, two flows, parallel to the oncological path, have been designed, aiming at a psychological and nutritional assessment of the patient, and the possible treatment of these aspects, if necessary. The entire thesis project was based on the effort to make a substantial contribution to the development of the application, in such a way as to make CAPABLE a real turning point for the patient's well-being and quality of life.È consentito all'utente scaricare e condividere i documenti disponibili a testo pieno in UNITESI UNIPV nel rispetto della licenza Creative Commons del tipo CC BY NC ND.
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https://hdl.handle.net/20.500.14239/12762