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Quality of life and shared decisions in patients with high grade gliomas

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... Shared decision-making is now a great challenge in the medical field, considering the growing role of the patient in the medical process. The current trend is to define the decision-making process in terms of 'patient-centred', to indicate the increased responsibility of the patient in the interaction with a doctor and in the evaluation of costs and benefits of a choice, when 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 it is not quantifiable a priori (Pravettoni et al. 2006). The medical decision is then taken together with the patient, respecting his values and preferences (Reyna et al. 2015). ...
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In the first section of this chapter, we discuss the concepts that are at the basis of adequate comprehension of genetic risk information, such as health/genetic literacy and numeracy, aspects that the general public would need to acquire to make informed decisions. Then we will focus on the psychological implication related to genetic risk communication, the individual predispositions, and the cognitive aspects that may influence the level of understanding of genetic concepts and the consequent ability to manage genetic results. Finally, we aim to introduce a modern approach to empower people through the use of new technologies and improve their knowledge of genetics. We will focus on the application of serious games for educating laypeople and will present tools developed within the Mind the Risk project, specifically created to support the players’ sense of self-efficacy in managing genetic risk information.
... In this framework, it is vital to analyse all the conditions that may support psychological adjustment to this difficult journey. Different studies have shown the importance of treatment tolerability [8], symptoms relief [3], and psychological wellness [19, 20]. Furthermore, we know that subjective expectations are very important for the patient’s perception of their QoL [21, 22]. ...
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Quality of life (QoL) is an increasingly important outcome measure in medicine. Health, in fact, is not only based on functional status but also on psychological and social well being. Since QoL is related to the patient’s perception of their position in life in relation to their goals, expectations, standards and concerns, the way in which the medical context is experienced may be critical. We then hypothesised that self-perceived QoL may be linked to unmet needs in information management and decision involvement. To analyse this hypothesis, we conducted a quantitative study on 84 consecutive patients with a diagnosis of primary high-grade glioma. The functional assessment of cancer therapy-Brain (FACT-Br) scales, the hospital anxiety and depression (HAD) scale and the need evaluation questionnaire (NEQ) questionnaire were used, in order to measure quality-of-life dimension, mood and unmet needs. Patients were classified as having no need (cluster 1), a moderate need (cluster 2) or a high need (cluster 3) to be more involved in the clinical process. Our data confirmed previous studies in other clinical areas, showing that shared decision might contribute to a better adaptation process to the illness [1]. In fact, patients in cluster 1 showed a significant better self-perceived QoL, despite the lack of clinical differences between clusters. The study showed that patients satisfied with respect to decisional involvement seem to be able to better cope with their disease. Finally, the study suggests the need for a more attuned decision-making process in approaching clinical decisions. Physicians need to better understand patient preferences related to information and decision sharing.
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