RT info:eu-repo/semantics/article
T1 Perception of social and educational quality of life of minors diagnosed with rare diseases: A systematic review and meta-analysis
A1 Romay Coca, Juán
A1 Gómez Redondo, Susana
A1 Soto Sánchez, Alberto
A1 Lozano Blasco, Raquel
A1 Romero González, Borja
K1 Rare diseases
K1 Enfermedades raras
K1 Quality of life
K1 Calidad de vida
K1 Education - Social aspects
K1 Educación - Aspecto social
K1 Educación de niños
K1 Education
K1 Children
K1 Pediatrics
K1 Public health
K1 6310.03 Enfermedad
K1 5312.04 Educación
K1 3201.10 Pediatría
K1 3212 Salud Publica
AB 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.
PB MDPI
SN 1660-4601
YR 2023
FD 2023
LK https://uvadoc.uva.es/handle/10324/63216
UL https://uvadoc.uva.es/handle/10324/63216
LA eng
NO International Journal of Environmental Research and Public Health, 2023, Vol. 20, Nº. 2, 933
NO Producción Científica
DS UVaDOC
RD 19-nov-2024