Changes in Correlates of Health-Related Quality of Life Between Children with Spina Bifida and Their Parents as Influenced by Their Level of Independence in Toileting Self-Management: A Cross-Sectional Study

Abstract

Background Spina bifida (SB) leads to various complications, such as bladder and bowel disorders, which can significantly impact quality of life (QOL). Parents of children with SB are often heavily involved in bladder and bowel management, which can affect their own QOL. Therefore, transitioning to independent bladder and bowel management is pivotal because it influences the QOL of both children with SB and their parents. In this study, we investigated changes in health-related quality of life (HRQOL) among children with SB and their parents in the process of attaining independence in bladder and bowel self-management. Methods Children with SB aged 8-17 years and their parents completed the Japanese version of the QOL assessment in SB for children/teenagers (QUALAS-C/T-J) and the Short Form-8 (SF-8). Independence in bladder and bowel management was assessed using a visual analogue scale (VAS). We calculated the correlation between children's or parents' HRQOL and the children's level of independence in bladder and bowel management. Additionally, we conducted a Mann-Whitney U test on the scores of the higher and lower independence groups. The correlation between parent and child HRQOL was analyzed by dividing children's independence into two groups. Results This study consisted of 83 parent-child pairs. Parents' and children's HRQOL and levels of self-management independence were not significantly correlated, either overall or by level of independence. The parent-child group with less independence, especially in bowel management, showed moderate to strong HRQOL correlations, whereas the group with more independence showed weaker correlations. Conclusions The strength of the correlation for parent-child HRQOL was found to change based on the level of independence in bladder and bowel self-management. These results suggest that the strength of parent-child cohesion tends to be pronounced in regard to the children's degree of independence in bowel management.

Keywords: child; health-related quality of life; incontinence; parent; spinal dysraphism; transition.

Figure 1. Scatterplot of Bladder and Bowel Control independence for children with SB

The figure shows a circle plot of the VAS scores for responses from children with SB and their parents. Panels A and B represent scatterplots of Bladder and Bowel Control independence, respectively. Each median value is shown as a line on the figure. SB: Spina bifida; VAS: Visual analogue scale