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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.
摘要：
背景脊柱裂（SB）导致各种并发症，比如膀胱和肠道疾病，这会显著影响生活质量(QOL)。SB儿童的父母通常大量参与膀胱和肠道管理，这会影响他们自己的QOL。因此,过渡到独立的膀胱和肠道管理是至关重要的，因为它会影响患有SB的儿童及其父母的生活质量。在这项研究中,我们调查了SB患儿及其父母在实现膀胱和肠自我管理独立过程中健康相关生活质量(HRQOL)的变化.方法8-17岁的SB儿童及其父母完成了日本版的儿童/青少年SB（QUALAS-C/T-J）和简短表格8（SF-8）的QOL评估。使用视觉模拟量表（VAS）评估膀胱和肠道管理的独立性。我们计算了儿童或父母的HRQOL与儿童在膀胱和肠管理中的独立性水平之间的相关性。此外,我们对较高和较低独立性组的分数进行了Mann-WhitneyU检验.通过将儿童的独立性分为两组，分析父母和孩子HRQOL之间的相关性。结果本研究由83对亲子关系组成。父母和子女的HRQOL与自我管理独立性水平无显著相关性,无论是整体还是独立程度。独立性较低的亲子组，尤其是在肠道管理方面，显示出中度到强烈的HRQOL相关性，而独立性更强的组显示出较弱的相关性。结论根据膀胱和肠自我管理的独立性水平，发现亲子HRQOL的相关性强度发生变化。这些结果表明，就儿童在肠道管理中的独立性而言，亲子凝聚力的强度趋于明显。
