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Perception of Social and Educational Quality of Life of Minors Diagnosed with Rare Diseases: A Systematic Review and Meta-Analysis

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  • Juan R. Coca

    (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)

  • Susana Gómez-Redondo

    (Social Research Unit on Health and Rare Diseases and Transdisciplinary Center for Research in Education, Department of Pedagogy, University of Valladolid, 42004 Soria, Spain)

  • Alberto Soto-Sánchez

    (Social Research Unit on Health and Rare Diseases, Department of Psychology, University of Valladolid, 42004 Soria, Spain)

  • Raquel Lozano-Blasco

    (Psychology and Sociology Department, Faculty of Education, University of Zaragoza, 50009 Zaragoza, Spain)

  • Borja Romero-Gonzalez

    (Social Research Unit on Health and Rare Diseases, Department of Psychology, University of Valladolid, 42004 Soria, Spain)

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.

Suggested Citation

  • Juan R. Coca & Susana Gómez-Redondo & Alberto Soto-Sánchez & Raquel Lozano-Blasco & Borja Romero-Gonzalez, 2023. "Perception of Social and Educational Quality of Life of Minors Diagnosed with Rare Diseases: A Systematic Review and Meta-Analysis," IJERPH, MDPI, vol. 20(2), pages 1-17, January.
    • Handle: RePEc:gam:jijerp:v:20:y:2023:i:2:p:933-:d:1025105
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    References listed on IDEAS

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    1. Johannes Boettcher & Jonas Denecke & Claus Barkmann & Silke Wiegand-Grefe, 2020. "Quality of Life and Mental Health in Mothers and Fathers Caring for Children and Adolescents with Rare Diseases Requiring Long-Term Mechanical Ventilation," IJERPH, MDPI, vol. 17(23), pages 1-12, December.
    2. Drukker, Marjan & Kaplan, Charles & Feron, Frans & van Os, Jim, 2003. "Children's health-related quality of life, neighbourhood socio-economic deprivation and social capital. A contextual analysis," Social Science & Medicine, Elsevier, vol. 57(5), pages 825-841, September.
    3. Wolfgang Briegel & Jan Greuel & Sanna Stroth & Nina Heinrichs, 2019. "Parents’ Perception of Their 2–10-Year-Old Children’s Contribution to The Dyadic Parent-Child Relationship in Terms of Positive and Negative Behaviors," IJERPH, MDPI, vol. 16(7), pages 1-26, March.
    4. Johannes Boettcher & Michael Boettcher & Silke Wiegand-Grefe & Holger Zapf, 2021. "Being the Pillar for Children with Rare Diseases—A Systematic Review on Parental Quality of Life," IJERPH, MDPI, vol. 18(9), pages 1-13, May.
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