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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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In the long run economic growth does not improve people's well-being. Traditional theories – adaptation and social comparisons – explain this evidence, but they don't explain what shapes the trend of subjective well-being and its differences across countries. Recent research identified in social capital a plausible candidate to explain the trends of well-being. This dissertation adopts various econometric techniques to explore the relationship over time among social capital, economic growth and subjective well-being. The main conclusion is that social capital is a good predictor of the trend of subjective well-being, both within and across countries. Hence, policies for well-being should aim at preserving and enhancing social capital for the quality of the social environment matters.

Quality of life.

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1. Van curatie naar palliatie.2. Psychische en emotionele aspecten binnen palliatieve zorg.3. Sociaal netwerk rondom de patiënt.4. Het hart van de zorg: naar een palliatieve zorgethiek.5. Pijn.6. Vermoeidheid.7. Problemen met ademhalen.8. Maag-darmklachten.9. Mond-huid- en wondverzorging bij palliatieve patiënten.10. Angst.11. Onrust, verwardheid en agitatie binnen palliatieve zorg.12. Zingeving, zinvragen en zinervaring binnen de context van palliatieve zorg.13. Verbeteren van de levenskwaliteit door toepassing van relaxatietechnieken.14. Palliatieve zorg: de organisatie van alledag.15. Palliatieve zorg en thuiszorgtechnologie.

Palliative Care --- Quality of Life

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In this work, we show a narrative review conserning instruments to measure the quality of Life in Health Care from a patients point of view. In particular, we pay attention on the construction of questionnaire.

Quality of life. --- Social indicators.

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In this extensive survey, two renowned quality of life experts provide a global outlook on quality of life issues for people with mental retardation.

People with mental disabilities --- Quality of life