The Quality of Life of Caregivers who Care for a Child with a Rare Disease - Perception of Changes as a Result of Care in the Czech Republic

Result code in IS VaVaI
<a href="https://www.isvavai.cz/riv?ss=detail&h=RIV%2F61989592%3A15410%2F14%3A33149156" target="_blank" >RIV/61989592:15410/14:33149156 - isvavai.cz</a>
Result on the web
<a href="http://www.sciencedirect.com/science/article/pii/S1877042814012968" target="_blank" >http://www.sciencedirect.com/science/article/pii/S1877042814012968</a>
DOI - Digital Object Identifier
<a href="http://dx.doi.org/10.1016/j.sbspro.2014.01.1279" target="_blank" >10.1016/j.sbspro.2014.01.1279</a>

Result language
angličtina
Original language name
The Quality of Life of Caregivers who Care for a Child with a Rare Disease - Perception of Changes as a Result of Care in the Czech Republic
Original language description
The so called rare diseases (further RD) are a large heterogenous group of diseases requiring a long-term care. They are very often severe diseases with a very unfavourable even infaust prognosis. In recent years there has been an improvement in the diagnostic and in some cases also therapeutic possibilities. The lifespan of patients is thus extended. The paper describes selected results of an extensive study monitoring the quality of life of caregivers who care for a child with a rare disease. The study presents evaluation of questionnaires from parents of children with the following diseases: cystic fibrosis (CF), spinal muscular atrophy (SMA), mucopolysaccharidosis (MPS), group of metabolic disorders (MP) and achondroplasis (ACH). It was confirmed that most monitored areas deteriorated during the care. Statistically significant differences in the impacts of these factors on personal and social life of respondents from the groups: caregivers who care for a family member with a rare d
Czech name
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Czech description
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Project
<a href="/en/project/GA406%2F09%2F0177" target="_blank" >GA406/09/0177: Quality of life of persons taking care of a family member with a severe health handicap</a><br>
Continuities
P - Projekt vyzkumu a vyvoje financovany z verejnych zdroju (s odkazem do CEP)

Publication year
2014
Confidentiality
S - Úplné a pravdivé údaje o projektu nepodléhají ochraně podle zvláštních právních předpisů

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