Increasing the Health-Related Quality of Life in Children with Congenital Rubella Syndrome: A Mixed-methods Study

Background: Rubella infection during the first trimester of pregnancy is a significant cause of fetal malformation syndrome, known as Congenital Rubella Syndrome (CRS). The most prevalent abnormalities associated with CRS are hearing loss, vision impairment (primarily congenital cataracts), congenital heart disease, and global developmental delay affecting the children's quality of life (QoL). A Community Engagement Program was arranged collaboratively to increase the QoL of children with CRS and enhance parents' skills and knowledge to better care for their children with CRS.Methods: A mixed-method descriptive study was conducted to assess the QoL improvement in children with CRS and to determine parents' knowledge about CRS. Children's QoL data were obtained using the Pediatric Quality of Life Inventory (PedsQL)TM 4.0 Generic Core Scales and analyzed with paired T-tests. A survey and focus group discussion (FGD) were used to gather parents' knowledge about CRS.Results: We involved ten members willing to participate voluntarily in the PedsQL assessment and FGD. The result was an increase in patients' QoL in the Physical Function domain that was statistically significant: pre-test and post-test physical health summary (490 (±261) vs. 510 (±251); p=0.022), social (322 (±126) vs. 337 (±113); p=0.217), emotional (370 (±105) vs. 397 (±105); p=0.065), and school (342 (±94) vs. 355 (±97); p=0.586). From the survey and the FGD, the parents had diverse experiences and understanding of CRS-supporting examinations and treatments needed. Parents felt the children's growth and development, social and school functions were the common burdens. In order to help CRS prevention, the parents suggested a more comprehensive premarital program and antenatal care.Conclusions: The Community Engagement Program helps to increase the patients’ QoL in the Physical Function domain. Comprehensive multidiscipline management is needed to support children's growth, social function, and educational function. Periodic evaluations are required to monitor the QoL of children with CRS.