000124376 001__ 124376
000124376 005__ 20240731103320.0
000124376 0247_ $$2doi$$a10.3390/ijerph20020933
000124376 0248_ $$2sideral$$a132716
000124376 037__ $$aART-2023-132716
000124376 041__ $$aeng
000124376 100__ $$aCoca, Juan R.
000124376 245__ $$aPerception of social and educational quality of life of minors diagnosed with rare diseases: a systematic review and meta-analysis
000124376 260__ $$c2023
000124376 5060_ $$aAccess copy available to the general public$$fUnrestricted
000124376 5203_ $$aThis 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.
000124376 540__ $$9info:eu-repo/semantics/openAccess$$aby$$uhttp://creativecommons.org/licenses/by/3.0/es/
000124376 592__ $$a0.808$$b2023
000124376 593__ $$aHealth, Toxicology and Mutagenesis$$c2023$$dQ2
000124376 593__ $$aPublic Health, Environmental and Occupational Health$$c2023$$dQ2
000124376 593__ $$aPollution$$c2023$$dQ2
000124376 594__ $$a7.3$$b2023
000124376 655_4 $$ainfo:eu-repo/semantics/article$$vinfo:eu-repo/semantics/publishedVersion
000124376 700__ $$aGómez-Redondo, Susana
000124376 700__ $$aSoto-Sánchez, Alberto
000124376 700__ $$0(orcid)0000-0002-0100-1449$$aLozano-Blasco, Raquel$$uUniversidad de Zaragoza
000124376 700__ $$aRomero-Gonzalez, Borja
000124376 7102_ $$14009$$2735$$aUniversidad de Zaragoza$$bDpto. Psicología y Sociología$$cÁrea Psicolog.Evolut.Educac
000124376 773__ $$g20, 2 (2023), 933 [17 pp.]$$pInt. j. environ. res. public health$$tInternational journal of environmental research and public health$$x1661-7827
000124376 8564_ $$s1807831$$uhttps://zaguan.unizar.es/record/124376/files/texto_completo.pdf$$yVersión publicada
000124376 8564_ $$s2781988$$uhttps://zaguan.unizar.es/record/124376/files/texto_completo.jpg?subformat=icon$$xicon$$yVersión publicada
000124376 909CO $$ooai:zaguan.unizar.es:124376$$particulos$$pdriver
000124376 951__ $$a2024-07-31-09:42:42
000124376 980__ $$aARTICLE