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Validation of Childhood Rare Epilepsy Social Impact Assessment (CRESIA) to Measure the Social and Family Impact of Rare Childhood Diseases with Epilepsy

This study addresses the social relevance of low-prevalence childhood diseases and reports the process of generation and validation of a tool to assess the social impact on the direct family environment and the social context of reference. The aim of the process of construction and validation of thi...

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Autores principales: Salom, Rafael, Aras, Luis Miguel, Piñero, Jessica, Duñabeitia, Jon Andoni
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9695819/
https://www.ncbi.nlm.nih.gov/pubmed/36431197
http://dx.doi.org/10.3390/jcm11226720
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author Salom, Rafael
Aras, Luis Miguel
Piñero, Jessica
Duñabeitia, Jon Andoni
author_facet Salom, Rafael
Aras, Luis Miguel
Piñero, Jessica
Duñabeitia, Jon Andoni
author_sort Salom, Rafael
collection PubMed
description This study addresses the social relevance of low-prevalence childhood diseases and reports the process of generation and validation of a tool to assess the social impact on the direct family environment and the social context of reference. The aim of the process of construction and validation of this instrument is to provide the field with a tool with the capacity to shed light on the social consequences of suffering from a low-prevalence disease, specifically those comorbid with treatment-resistant epileptic seizures of childhood origin. The instrument here presented and called CRESIA (acronym derived from Childhood Rare Epilepsy Social Impact Assessment) provides valuable information on six specific areas framing health, economic, psychological, social, and child-related stressors, as well as family. CRESIA represents a valid and reliable instrument for family members or primary caregivers of children and adolescents with childhood rare epilepsy.
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spelling pubmed-96958192022-11-26 Validation of Childhood Rare Epilepsy Social Impact Assessment (CRESIA) to Measure the Social and Family Impact of Rare Childhood Diseases with Epilepsy Salom, Rafael Aras, Luis Miguel Piñero, Jessica Duñabeitia, Jon Andoni J Clin Med Article This study addresses the social relevance of low-prevalence childhood diseases and reports the process of generation and validation of a tool to assess the social impact on the direct family environment and the social context of reference. The aim of the process of construction and validation of this instrument is to provide the field with a tool with the capacity to shed light on the social consequences of suffering from a low-prevalence disease, specifically those comorbid with treatment-resistant epileptic seizures of childhood origin. The instrument here presented and called CRESIA (acronym derived from Childhood Rare Epilepsy Social Impact Assessment) provides valuable information on six specific areas framing health, economic, psychological, social, and child-related stressors, as well as family. CRESIA represents a valid and reliable instrument for family members or primary caregivers of children and adolescents with childhood rare epilepsy. MDPI 2022-11-13 /pmc/articles/PMC9695819/ /pubmed/36431197 http://dx.doi.org/10.3390/jcm11226720 Text en © 2022 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Salom, Rafael
Aras, Luis Miguel
Piñero, Jessica
Duñabeitia, Jon Andoni
Validation of Childhood Rare Epilepsy Social Impact Assessment (CRESIA) to Measure the Social and Family Impact of Rare Childhood Diseases with Epilepsy
title Validation of Childhood Rare Epilepsy Social Impact Assessment (CRESIA) to Measure the Social and Family Impact of Rare Childhood Diseases with Epilepsy
title_full Validation of Childhood Rare Epilepsy Social Impact Assessment (CRESIA) to Measure the Social and Family Impact of Rare Childhood Diseases with Epilepsy
title_fullStr Validation of Childhood Rare Epilepsy Social Impact Assessment (CRESIA) to Measure the Social and Family Impact of Rare Childhood Diseases with Epilepsy
title_full_unstemmed Validation of Childhood Rare Epilepsy Social Impact Assessment (CRESIA) to Measure the Social and Family Impact of Rare Childhood Diseases with Epilepsy
title_short Validation of Childhood Rare Epilepsy Social Impact Assessment (CRESIA) to Measure the Social and Family Impact of Rare Childhood Diseases with Epilepsy
title_sort validation of childhood rare epilepsy social impact assessment (cresia) to measure the social and family impact of rare childhood diseases with epilepsy
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9695819/
https://www.ncbi.nlm.nih.gov/pubmed/36431197
http://dx.doi.org/10.3390/jcm11226720
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