Citation: Coca, J.R.; Gómez- Redondo, S.; Soto-Sánchez, A.; Lozano-Blasco, R.; Romero- Gonzalez, B. Perception of Social and Educational Quality of Life of Minors Diagnosed with Rare Diseases: A Systematic Review and Meta- Analysis. Int. J. Environ. Res. Public Health 2023, 20, 933. https:// doi.org/10.3390/ijerph20020933 Academic Editors: Juan Carlos Sánchez-García, Jonathan Cortés Martín and Raquel Rodríguez-Blanque Received: 24 November 2022 Revised: 31 December 2022 Accepted: 3 January 2023 Published: 4 January 2023 Copyright: © 2023 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https:// creativecommons.org/licenses/by/ 4.0/). International Journal of Environmental Research and Public Health Systematic Review Perception of Social and Educational Quality of Life of Minors Diagnosed with Rare Diseases: A Systematic Review and Meta-Analysis Juan R. Coca 1 , Susana Gómez-Redondo 2 , Alberto Soto-Sánchez 3, * , Raquel Lozano-Blasco 4 and Borja Romero-Gonzalez 3 1 Social Research Unit on Health and Rare Diseases and Transdisciplinary Center for Research in Education, Department of Sociology and Social Work, University of Valladolid, 42004 Soria, Spain 2 Social Research Unit on Health and Rare Diseases and Transdisciplinary Center for Research in Education, Department of Pedagogy, University of Valladolid, 42004 Soria, Spain 3 Social Research Unit on Health and Rare Diseases, Department of Psychology, University of Valladolid, 42004 Soria, Spain 4 Psychology and Sociology Department, Faculty of Education, University of Zaragoza, 50009 Zaragoza, Spain * Correspondence: alberto.soto@uva.es Abstract: 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. Keywords: rare diseases; quality of life; social-educational 1. Introduction The term rare disease (RD) refers to a large number of conditions with a very low prevalence rate. In fact, in the year 2000, the European Union considered that a condition could be classified as rare when it presents a prevalence rate of 1 out of 2000 people [1]. It has been estimated that 300 to 400 million people worldwide have a RD [2]. Nowadays, there are 6000 to 8000 conditions included in this concept [3]. As was indicated, the notion of RD comprises a very large diversity of conditions. However, all of these conditions share common elements that make them treatable, as a single entity. Many of these conditions generate disabilities and chronic affectations, with delayed diagnoses and around 80% of monogenic conditions [4]. Moreover, most of those affected by a rare disease receive treatments to alleviate their symptoms, since their pathologies cannot be cured [2]. RDs mostly affect the youngest sectors of the population (children and adolescents), with a great emotional impact on those affected by RDs and their families [5]. This is due to the fact that the population affected by RDs requires great care, and the existence of an RD Int. J. Environ. Res. Public Health 2023, 20, 933. https://doi.org/10.3390/ijerph20020933 https://www.mdpi.com/journal/ijerph