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

Kód výsledku v 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>

Nalezeny alternativní kódy

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

Výsledek na webu

<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>

Jazyk výsledku

angličtina

Název v původním jazyce

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

Popis výsledku v původním jazyce

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.

Název v anglickém jazyce

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

Popis výsledku anglicky

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.

Druh

J_x - Nezařazeno - Článek v odborném periodiku (Jimp, Jsc a Jost)

CEP obor

FH - Neurologie, neurochirurgie, neurovědy

OECD FORD obor

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Projekt

—

Návaznosti

I - Institucionalni podpora na dlouhodoby koncepcni rozvoj vyzkumne organizace

Rok uplatnění

2014

Kód důvěrnosti údajů

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

Název periodika

Pediatric Neurology

ISSN

0887-8994

e-ISSN

—

Svazek periodika

50

Číslo periodika v rámci svazku

6

Stát vydavatele periodika

US - Spojené státy americké

Počet stran výsledku

4

Strana od-do

591-594

Kód UT WoS článku

000336643700010

EID výsledku v databázi Scopus

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