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    Por favor, use este identificador para citar o enlazar este ítem:https://uvadoc.uva.es/handle/10324/63216

    Título
    Perception of social and educational quality of life of minors diagnosed with rare diseases: A systematic review and meta-analysis
    Autor
    Romay Coca, JuánAutoridad UVA Orcid
    Gómez Redondo, SusanaAutoridad UVA Orcid
    Soto Sánchez, AlbertoAutoridad UVA
    Lozano Blasco, Raquel
    Romero González, BorjaAutoridad UVA Orcid
    Año del Documento
    2023
    Editorial
    MDPI
    Descripción
    Producción Científica
    Documento Fuente
    International Journal of Environmental Research and Public Health, 2023, Vol. 20, Nº. 2, 933
    Resumo
    This study explores the perception of social and educational quality of life in minors with rare diseases (RDs). Two meta-analyses were performed, applying the random effects model. Results: Regarding the social Quality of Life, the meta-sample consisted of k = 40 samples, with a total population of 1943 children (mean age = 9.42 years), of whom 687 (35.3%) were girls, 615 (31.4%) were boys and 641 (33%) did not report their sex. The effect size was large (mean size = 7.68; p < 0.000; 99% Confidence Interval; lower limit = 7.22; upper limit = 8.14). The results of the meta-regression and model analysis showed the importance of the measurement instrument (Paediatric Quality-of-Life Inventory and Prototypes of the Quality of life) and the dissimilarity of perception among caregivers. The nationality and the type of RD were not relevant. With respect to the educational Quality of Life, the meta-sample consisted of k = 19 samples, with 699 minors (mean age = 10.3 years), of whom 266 (38%) were girls, 242 (34.6%) were boys and 191 (27.4%) did not report their sex. The effect size was large (mean size = 7.15; p < 0.000; 99% CI; lower limit = 6.35; upper limit = 7.94). The meta-regression and comparison of models showed that the type of RD was essential. The measurement instrument was a moderating variable, especially the Parent version Paediatric Quality-of-Life Inventory. This study reveals the need for further research on RDs and their social–educational effects.
    Materias (normalizadas)
    Rare diseases
    Enfermedades raras
    Quality of life
    Calidad de vida
    Education - Social aspects
    Educación - Aspecto social
    Educación de niños
    Education
    Children
    Pediatrics
    Public health
    Materias Unesco
    6310.03 Enfermedad
    5312.04 Educación
    3201.10 Pediatría
    3212 Salud Publica
    ISSN
    1660-4601
    Revisión por pares
    SI
    DOI
    10.3390/ijerph20020933
    Patrocinador
    Universidad de Valladolid - (PROYEMER-2021- 62)
    Version del Editor
    https://www.mdpi.com/1660-4601/20/2/933
    Propietario de los Derechos
    © 2023 The authors
    Idioma
    eng
    URI
    https://uvadoc.uva.es/handle/10324/63216
    Tipo de versión
    info:eu-repo/semantics/publishedVersion
    Derechos
    openAccess
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    • DEP68 - Artículos de revista [120]
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    Perception-of-Social-and-Educational-Quality-of-Life.pdf
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