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@article{1216816,
author = {Kocova, Helena and Dvorackova, Olga and Vondráček, Petr and Haberlova, Jana},
article_location = {New York},
article_number = {6},
doi = {http://dx.doi.org/10.1016/j.pediatrneurol.2014.01.037},
keywords = {health-related quality of life; neuromuscular disorders; spinal muscular atrophy; Czech Republic},
language = {eng},
issn = {0887-8994},
journal = {Pediatric Neurology},
title = {Health-Related Quality of Life in Children and Adolescents With Spinal Muscular Atrophy in the Czech Republic},
volume = {50},
year = {2014}
}
TY - JOUR
ID - 1216816
AU - Kocova, Helena - Dvorackova, Olga - Vondráček, Petr - Haberlova, Jana
PY - 2014
TI - Health-Related Quality of Life in Children and Adolescents With Spinal Muscular Atrophy in the Czech Republic
JF - Pediatric Neurology
VL - 50
IS - 6
SP - 591-594
EP - 591-594
PB - Elsevier Science Inc.
SN - 08878994
KW - health-related quality of life
KW - neuromuscular disorders
KW - spinal muscular atrophy
KW - Czech Republic
N2 - BACKGROUND: Spinal muscular atrophy is a rare hereditary neuromuscular disorder (with a prevalence of 1 per 30,000) that greatly debilitates patients and, in most cases, shortens their life expectancy. Although there is no causal therapy, improvements in symptomatic therapy have extended patients' life expectancy and increased their quality of life. Unfortunately, the advancements in care vary from country to country. To improve the care for children with spinal muscular atrophy in the Czech Republic, we created a survey to obtain the baseline information about their quality of life and compared the data with equivalent data from the United States. METHODS: We used the Pediatric Quality of Life Inventory 3.0 Neuromuscular Measurement Model, which is a health-related quality of life questionnaire specific to children with neuromuscular disorders. The survey was conducted on 35 children with genetically proven spinal muscular atrophy and their parents. RESULTS: Compared with the US data, the Czech data generally show a lower quality of life, mainly in the family resources part. The greatest score was achieved in the section about communication. Altogether, the parents' scores are lower than those of the children. CONCLUSION: In the Czech Republic, patients with spinal muscular atrophy and, especially their parents, have a significantly lower quality of life compared with US patients, mostly because of economic factors and a lack of social support. Our results reveal areas toward which improvement should be directed. The need for family support through social care as well as civic, patient, or organizational support is accentuated.
ER -
KOCOVA, Helena, Olga DVORACKOVA, Petr VONDRÁČEK a Jana HABERLOVA. Health-Related Quality of Life in Children and Adolescents With Spinal Muscular Atrophy in the Czech Republic. \textit{Pediatric Neurology}. New York: Elsevier Science Inc., 2014, roč.~50, č.~6, s.~591-594. ISSN~0887-8994. Dostupné z: https://dx.doi.org/10.1016/j.pediatrneurol.2014.01.037.
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