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The effect of current therapy on the quality of life of families of children with spinal muscular atrophy
Trnková, Eliška ; Jirkovský, Daniel (advisor) ; Vlachová, Marie (referee)
The bachelor thesis is focusedon with the infuence of current therapy on the quality of life of families of children with spinal muscular atrophy (SMA). The teoretical part of the thesis provides families a basic view of the issue of disease. The aim of the bachelor thesis was to assess posible changes in the perception of quality of life of children with SMA before and after the application of the medicinal product Spinraza. Individual dimensios of quality of life and categories of common daily activities were assesed. Methods: Quantitative research was carried out in the form of a questionnaire in threes neuromuscular centers and the patient oragnizations SMÁci. Athor's own questionnnaire the design rellies on a PedsQl touch screen (neuromuscular module). Research file concisted of 36 families of children with SMA (types I, II, III) treated with Spinraza. Results: Spinraza has the effect of improving some dimensions of quality of life and on daily activities. Of gross motor skills in 77,78 % of children.The overal respiration condition was improved in 44,44 %. Swallowing improved in 34,29 % of children, especiality in I. type. 16,64 % of families report their quality of live. Conclusion: Spinraza effetcts quality of life of families of children. A positiv sometimes significant, effect led to...
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