2026-04-23T21:06:30Zhttps://uvadoc.uva.es/oai/request

oai:uvadoc.uva.es:10324/840022026-04-13T19:02:04Zcom_10324_971com_10324_931com_10324_894col_10324_972

Coca, Juan R. Gómez-Redondo, Susana Soto-Sánchez, Alberto Lozano-Blasco, Raquel Romero-Gonzalez, Borja 2026-04-11T18:11:08Z 2026-04-11T18:11:08Z 2023 Coca, J. R., Gómez-Redondo, S., Soto-Sánchez, A., Lozano-Blasco, R., & Romero-Gonzalez, B. (2023). Perception of social and educational quality of life of minors diagnosed with rare diseases: A systematic review and meta-analysis. International Journal of Environmental Research and Public Health, 20(2), 933. https://doi.org/10.3390/ijerph20020933 https://uvadoc.uva.es/handle/10324/84002 10.3390/ijerph20020933 933 2 International Journal of Environmental Research and Public Health 20 1660-4601 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. University of Valladolid Grant number PROYEMER-2021-62 (Project Detection of socio-educational needs of students with rare diseases). application/pdf spa Multidisciplinary Digital Publishing Institute info:eu-repo/semantics/openAccess http://creativecommons.org/licenses/by-nc-nd/4.0/ Attribution-NonCommercial-NoDerivatives 4.0 Internacional Inclusive education Diversity in education Rare diseases Quality of life Social-education Meta-Analysis 5802.05 Educación Especial 6310 Problemas Sociales Perception of Social and Educational Quality of Life of Minors Diagnosed with Rare Diseases: A Systematic Review and Meta-Analysis info:eu-repo/semantics/article info:eu-repo/semantics/publishedVersion https://www.mdpi.com/1660-4601/20/2/933 SI