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Quality of life.

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Epidermolysis Bullosa (EB) is a group of genetic conditions that cause fragile and blistering skin. Although there are different types of EB, which differ in severity, their signs and symptoms overlap. As a result of this disorder, patients face an unbearable burden in their lives, and their Quality of Life (QoL) is negatively affected at every life cycle stage. Nevertheless, the assessment of the quality of life of these patients is scanty. This project aims to develop a patient-centered questionnaire to assess the QoL of EB patients. This tool will be a valid aid for clinicians to understand patients better and identify the areas that need more attention; moreover, it will allow them to follow the patients over time and evaluate the impact of any treatments. The methodological process to develop the questionnaire consisted of two phases: firstly, a critical review of scientific literature was performed; secondly, a pseudo-Delphi study was carried out. A multidisciplinary panel (including patients, caregivers, and clinicians) actively participated in round tables to discuss the main areas of interest. Starting from this initial set of areas and through the repetition of Delphi (up to three rounds), a gradual refinement of the statements was carried out to define a list of items to be included in an easy-to-use but meaningful questionnaire. The final patient-centered questionnaire is thus able to measure the QoL beyond the physical symptoms and the clinical evolution of the disease, encompassing functional autonomy, psycho-emotional state, social relations and the working field.

Quality of life.

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Since 2015, Germany has been hosting noticeable incoming flows of refugees and asylum seekers, leading, in 2020, the ranking of European countries and being the fifth in the world ranking for the number of hosted refugees. Despite the quality of life of refugees is expected to be improved in the aftermath of their arrival to Germany, refugees are still facing several problems of integration and economic deprivation (e.g., about 90% are unemployed). Hence, it is a worthwhile exercise to study how satisfied they are with their present life. Using a sample of 3,408 individuals from the German IAB-BAMF-SOEP Survey of Refugees (regarding refugees and asylum seekers who came to the country between January 2013 and January 2016), we present some preliminary analyses on the life satisfaction (LS) of these vulnerable individuals. Particularly, satisfaction levels were arranged by quartile and an ordinal regression model was estimated to focus on the association among levels of LS and main socio-demographic characteristics. Syrians experience worst perceived quality of life (LS), such as older and higher educated people, other things being equal. Uncertainty, due to their legal status or to lesser support received by law, may explain that those with dismissed or pending asylum application are less satisfied than refugees. Family arrangements, as expected, has an impact, other things being equal, on the overall life satisfaction: the higher the number of co-residing household members the higher the LS; cohabiting partner of spouse affect positively LS. Noticeably, LS is positively associated with satisfaction in specific domains such as health, privacy in the current living arrangement, and neighbourhood safety. Interesting insights come out for policy design.

Quality of life. --- Well-being.

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Our current economic systems have become addicted to growth at all costs, as measured by Gross Domestic Product (GDP). They assume that GDP growth is synonymous with increased wellbeing and prosperity. However, this approach has led to growing inequality, an escalating climate crisis, and the depletion of natural and social capital. Our approach to economics and development needs to be fundamentally transformed. New Challenges for Future Sustainability and Wellbeing is a collection of 25 studies about sustainability and the related challenges, such as income, wealth, social aspects, the environment, education and regional equality that influence the pace of economic development and deteriorates well-being of people and organisations all over the world. This book provides a platform for scholars, researchers and professionals from different disciplinary backgrounds to discuss, highlight and exchange ideas on these challenges and prospects for both economic and business development.

Quality of life. --- Sustainable development.

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Le bien-être est apparu comme une catégorie clé de la pensée sociale et politique, dans les domaines de la philosophie morale et politique, le développement, l’urbanisme, l’économie et la santé. Les groupes religieux et les thérapies alternatives placent le bien-être au centre de leurs approches et de leurs pratiques. Souvent perçue comme critère de cohésion sociale, elle est utilisée comme substitut de la justice sociale. En dépit du large éventail d’études sur ce sujet, le concept reste ambigu. Cet ouvrage veut contribuer à circonscrire le débat. Il réunit des contributions de plusieurs disciplines (sociologie, anthropologie, architecture, économie, anthropologie biologique) qui abordent la question à partir de plusieurs thèmes (santé, migration, conditions de travail, ville et architecture, politiques publiques) et propose des explorations théoriques sur l’objectivation et la mesure du bien-être rapportées à des contextes du Nord et du Sud (Afrique).

Well-being --- Quality of life --- Social indicators