124376 20240731103320.0 doi 10.3390/ijerph20020933 sideral 132716 ART-2023-132716 eng Coca, Juan R. Perception of social and educational quality of life of minors diagnosed with rare diseases: a systematic review and meta-analysis 2023 Access copy available to the general public Unrestricted 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. info:eu-repo/semantics/openAccess by http://creativecommons.org/licenses/by/3.0/es/ 0.808 2023 Health, Toxicology and Mutagenesis 2023 Q2 Public Health, Environmental and Occupational Health 2023 Q2 Pollution 2023 Q2 7.3 2023 info:eu-repo/semantics/article info:eu-repo/semantics/publishedVersion Gómez-Redondo, Susana Soto-Sánchez, Alberto Lozano-Blasco, Raquel Universidad de Zaragoza (orcid)0000-0002-0100-1449 Romero-Gonzalez, Borja 4009 735 Universidad de Zaragoza Dpto. Psicología y Sociología Área Psicolog.Evolut.Educac 20, 2 (2023), 933 [17 pp.] Int. j. environ. res. public health International journal of environmental research and public health 1661-7827 1807831 http://zaguan.unizar.es/record/124376/files/texto_completo.pdf Versión publicada 2781988 http://zaguan.unizar.es/record/124376/files/texto_completo.jpg?subformat=icon icon Versión publicada oai:zaguan.unizar.es:124376 articulos driver 2024-07-31-09:42:42 ARTICLE