Research tools for quality of life assessment of patients with cystic fibrosis
Journal Title: Pielęgniarstwo XXI wieku - Year 2013, Vol 12, Issue 2
Abstract
Cystic fibrosis is a genetic disorder which a few years back was considered a fatal childhood disorder. Comprehensive, multispecialty treatment resulted in the increase of the number of adults with cystic fibrosis which in turn brings about a need to minimize clinical interventions. That is why health related quality of life surveys are ever more important. Constant and comprehensive monitoring of HRQoL should complement the assessment of clinical parameters. The analysis of QoL could make planning and arranging patient’s care possible and allow modification of therapeutic approach based on present physical, social and psychological needs of a patient. The term HRQoL was coined by Schippera et al. in 1900. It is a multidimensional concept which in its holistic approach to man is directly related to the definition of health developed by the WHO in which health is defined as a state of complete physical, mental, and social well-being. Since the 90s there has been an ongoing development of studies in the field of QoL of people suffering from various conditions. The research and analysis methods include qualitative and quantitative tools. Quantitative tools encompass QoL self-assessment surveys. General and specific questionnaires may be applied in patients with CF including respiratory diseases specific and cystic fibrosis specific questionnaires.
Authors and Affiliations
Izabella Uchmanowicz, Beata Jankowska-Polańska, Marta Wleklik
Keywords
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