Health-Related Quality of Life in Children and Adolescents With Spinal Muscular Atrophy in the Czech Republic

Result code in IS VaVaI

<a href="https://www.isvavai.cz/riv?ss=detail&h=RIV%2F00216224%3A14110%2F14%3A00078415" target="_blank" >RIV/00216224:14110/14:00078415 - isvavai.cz</a>

Alternative codes found

RIV/60076658:12110/14:43886778 RIV/00216208:11130/14:10293029 RIV/00064203:_____/14:10293029

Result on the web

<a href="http://dx.doi.org/10.1016/j.pediatrneurol.2014.01.037" target="_blank" >http://dx.doi.org/10.1016/j.pediatrneurol.2014.01.037</a>

DOI - Digital Object Identifier

<a href="http://dx.doi.org/10.1016/j.pediatrneurol.2014.01.037" target="_blank" >10.1016/j.pediatrneurol.2014.01.037</a>

Result language

angličtina

Original language name

Health-Related Quality of Life in Children and Adolescents With Spinal Muscular Atrophy in the Czech Republic

Original language description

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 insymptomatic 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 ahealth-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.

Czech name

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Czech description

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Type

J_x - Unclassified - Peer-reviewed scientific article (Jimp, Jsc and Jost)

CEP classification

FH - Neurology, neuro-surgery, nuero-sciences

OECD FORD branch

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Project

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Continuities

I - Institucionalni podpora na dlouhodoby koncepcni rozvoj vyzkumne organizace

Publication year

2014

Confidentiality

S - Úplné a pravdivé údaje o projektu nepodléhají ochraně podle zvláštních právních předpisů

Name of the periodical

Pediatric Neurology

ISSN

0887-8994

e-ISSN

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Volume of the periodical

50

Issue of the periodical within the volume

6

Country of publishing house

US - UNITED STATES

Number of pages

4

Pages from-to

591-594

UT code for WoS article

000336643700010

EID of the result in the Scopus database

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