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

Soto-Sanchez, A (通讯作者),Univ Valladolid, Dept Psychol, Social Res Unit Hlth & Rare Dis, Soria 42004, Spain.
2023-1
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.
INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH
卷号:20|期号:2
收录类别:SCIE
语种
英语
来源机构
Universidad de Valladolid; Universidad de Valladolid; Universidad de Valladolid; Universidad de Valladolid; University of Zaragoza
资助机构
University of Valladolid
资助信息
This research was funded by the University of Valladolid, grant number PROYEMER-2021-62 (Project Detection of socio-educational needs of students with rare diseases).
被引频次(WOS)
0
被引频次(其他)
0
180天使用计数
0
2013以来使用计数
0
EISSN
1660-4601
出版年
2023-1
DOI
10.3390/ijerph20020933
学科领域
循证公共卫生
关键词
rare diseases quality of life social-educational
WOS学科分类
Environmental Sciences Public, Environmental & Occupational Health