<p>Aim: The overall aim of this thesis was to acquire knowledge about daily life with focus on eating problems during the trajectory of care for patients with head and neck cancer treated with radiotherapy. Method: The data in study I were gained from medical and nursing records of 50 patients. Documented parameters of eating problems, their causes and consequences, and undertaken interventions were collected before treatment, during radiotherapy, and one, six, and twelve months after completion of treatment, using a study-specific audit instrument. Data were analysed with descriptive and inferential non-parametric statistics. In study II eight patients were interviewed during the radiotherapy treatment period with focus on experiences of eating problems. In study III nine patients were interviewed six to twelve weeks after treatment with the focus on experiences of daily life during the trajectory of care having eating problems. In study IV twelve patients were interviewed about their conceptions of the significance of a supportive nursing care clinic during the whole trajectory of care. Data were analysed with interpretative phenomenology (II, III) and phenomenography (IV). Findings: The four studies showed that being a patient in the trajectory of care often meant that life was disturbed and threatened. This was partly due to the eating problems and their consequences, which could occur during the whole trajectory of care (I, III, IV) but was experienced as most intense and severe during radiotherapy (II) and the nearest weeks after completion of radiotherapy (III, IV). The disturbances and threats experienced due to eating problems could affect the whole person as they were physical (I-IV), psychological, social and existential (II, III). The experiences of eating problems due to the tumour and its treatment and the experience of having cancer per se were strongly connected as one phenomenon, which disturbed and threatened the informants’ daily life. The other part that disturbed the patients’ life was the waiting in suspense. A long and trying waiting in uncertainty was experienced due to lack of knowledge and support, practical as well as emotional. This was most pronounced during pauses in radiotherapy (III) and after completion of the treatment when the lack of support from the health care was obvious (I, II, III). The patients were then most often left to their own devices. In order to endure, they needed both inner strength, described as own coping strategies, and strength from outside, described as support from family, friends and health care professionals (II, III). The nurse clinic was found to give a hand to hold during the whole trajectory of care (IV). It could meet these patients’ needs of knowledge, care and support, both concerning practical measures related to the eating problems and other side-effects of the treatment, and concerning their emotional needs. In addition the nurse clinic could support the relatives in their worries and anxiety (IV). Conclusion: This thesis showed the necessity of continuous assessment, treatment and evaluation of patients’ problems, and the patients’ needs of information and support throughout the trajectory of care.</p>

Aim: The overall aim of this thesis was to acquire knowledge about daily life with focus on eating problems during the trajectory of care for patients with head and neck cancer treated with radiotherapy. Method: The data in study I were gained from medical and nursing records of 50 patients. Documented parameters of eating problems, their causes and consequences, and undertaken interventions were collected before treatment, during radiotherapy, and one, six, and twelve months after completion of treatment, using a study-specific audit instrument. Data were analysed with descriptive and inferential non-parametric statistics. In study II eight patients were interviewed during the radiotherapy treatment period with focus on experiences of eating problems. In study III nine patients were interviewed six to twelve weeks after treatment with the focus on experiences of daily life during the trajectory of care having eating problems. In study IV twelve patients were interviewed about their conceptions of the significance of a supportive nursing care clinic during the whole trajectory of care. Data were analysed with interpretative phenomenology (II, III) and phenomenography (IV). Findings: The four studies showed that being a patient in the trajectory of care often meant that life was disturbed and threatened. This was partly due to the eating problems and their consequences, which could occur during the whole trajectory of care (I, III, IV) but was experienced as most intense and severe during radiotherapy (II) and the nearest weeks after completion of radiotherapy (III, IV). The disturbances and threats experienced due to eating problems could affect the whole person as they were physical (I-IV), psychological, social and existential (II, III). The experiences of eating problems due to the tumour and its treatment and the experience of having cancer per se were strongly connected as one phenomenon, which disturbed and threatened the informants’ daily life. The other part that disturbed the patients’ life was the waiting in suspense. A long and trying waiting in uncertainty was experienced due to lack of knowledge and support, practical as well as emotional. This was most pronounced during pauses in radiotherapy (III) and after completion of the treatment when the lack of support from the health care was obvious (I, II, III). The patients were then most often left to their own devices. In order to endure, they needed both inner strength, described as own coping strategies, and strength from outside, described as support from family, friends and health care professionals (II, III). The nurse clinic was found to give a hand to hold during the whole trajectory of care (IV). It could meet these patients’ needs of knowledge, care and support, both concerning practical measures related to the eating problems and other side-effects of the treatment, and concerning their emotional needs. In addition the nurse clinic could support the relatives in their worries and anxiety (IV). Conclusion: This thesis showed the necessity of continuous assessment, treatment and evaluation of patients’ problems, and the patients’ needs of information and support throughout the trajectory of care.

ContexteDans le domaine de la santé, l’analyse des données pour l’extraction des connaissances est un enjeu en pleine expansion. Les questions sur l’organisation des soins ou encore l’étude de l’association entre le traitement et qualité de vie (QdV) perçue pourraient être abordées sous cet angle. L’évolution des technologies permet de disposer d’outils de fouille de données performants et d’outils statistiques enrichis de méthode avancées, utilisables par les non experts. Nous avons illustré cette méthode au travers de deux questions d’actualité :1 / Quelle organisation des soins pour la prise en charge des cancers ? 2/ étude de la relation chez les patients souffrant d’un cancer métastatique entre la QdV liée à la santé perçue et les traitements reçus dans le cadre d’un essai thérapeutique.Matériels et méthodesNous disposons aujourd’hui de volumineuses bases de données. Certaines retracent le parcours hospitalier des patients, comme c’est le cas pour les données d’activités hospitalières recueillies dans le cadre du programme de médicalisation des systèmes d’information (PMSI). D’autres conservent les informations sur la QdV perçues par les patients et qui recueillies en routine actuellement dans les essais thérapeutiques. L’analyse de ces données a été réalisée suivant trois étapes principales : Tout d’abord une étape de préparation des données dont l’objectif était la compatibilité à un concept d’analyse précisé. Il s’agissait par exemple de transformer une base de données classique (centrée sur le patient) vers une nouvelle base de données où « l’unité de recueil » est une entité autre que le patient (ex. trajectoire de soins). Ensuite une deuxième étape consacrée à l’application de méthodes de fouille de données pour l’extraction connaissances : les méthodes d’analyse formelle des concepts ou encore les méthodes de classifications non-supervisée. Et enfin l’étape de restitution des résultats obtenus et présenté sous forme graphique.RésultatsPour la question de l’organisation des soins, nous avons construit une typologie des trajectoires hospitalières des soins permettait de réaliser un état des lieux des pratiques dans la prise en charge des cancers étudié depuis la chirurgie jusqu’à un an de suivi des patients. Dans le cas du Cancer du sein, nous avons décrit une typologie de prise en charge sur la base des coûts d’hospitalisation sur un suivi d’un an. Pour la deuxième question, nous avons également construit une typologie des profils évolutifs de la QdV. Celle-ci comportait 3 classes : une classe d’amélioration, une classe de stabilité et une classe de dégradation.ConclusionL’intérêt majeur de ce travail était de mettre en évidence des pistes de réflexion permettant des avancées dans la compréhension et la construction de solutions adaptées aux problèmes. / Context In healthcare domain, data mining for knowledge discovery represent a growing issue. Questions about the organisation of healthcare system and the study of the relation between treatment and quality of life (QoL) perceived could be addressed that way. The evolution of technologies provides us with efficient data mining tools and statistical packages containing advanced methods available for non-experts. We illustrate this approach through two issues: 1 / What organisation of healthcare system for cancer diseases management? 2 / Exploring in patients suffering from metastatic cancer, the relationship between health-related QoL perceived and treatment received as part of a clinical trial. Materials and methods Today we have large databases. Some are dedicated to gather together all hospital stays, as is the case for the national medico-administrative DRG-type database. Others are used to store information about QoL perceived by patients, routinely collected in clinical trials. The analysis of these data was carried out following three main steps: In the first step, data are prepared to be useable according to a defined concept of data analysis. For example, a classical database (patient-centered) was converted to a new database organised around a new defined entity which was different from the patient (eg. Care trajectory). Then in the second step, we applied data mining methods for knowledge discovery: we used the formal analysis of concepts method and unsupervised clustering techniques. And finally the results were presented in a graphical form. Results Concerning the question of the organisation of healthcare system, we constructed a typology of hospital care trajectories. We were able then to describe current practice in the management of cancers from the first cancer related surgical operation until one year of follow-up. In the case of breast cancer, we’ve described a typology of care on the basis of hospital costs over a one year follow up. Concerning the second question, we have also constructed a typology of QoL change patterns. This comprised three groups: Improvement, stability and degradation group.Conclusion The main interest of this work was to highlight new thoughts, which advances understanding and, contributing in appropriate solutions building.