背景:后尿道瓣膜(PUV)是一种慢性疾病,会对儿童和家庭健康相关的生活质量(HRQOL)产生不利影响。令人惊讶的是,到目前为止,尚未研究这种情况对PUV儿童生活质量的影响。因此,我们的目标是在我们的机构PUV诊所中使用经过验证的问卷评估这一重要方面的护理.
方法:从2022年12月到2024年1月,在我们的PUV诊所中分发了PedsQL清单和相关的家庭影响模块。较高的分数反映了较好的HRQoL和对家庭的影响较小。8岁以上的儿童自己完成工具,否则,父母代表孩子完成工具。我们将PUV得分与健康儿童和其他慢性疾病的心理测量数据进行了比较。
结果:共有112个家庭完成了问卷。HRQoL总分为80±13。总的来说,我们注意到,反映心理社会影响的领域显著低于身体健康(76±16vs.89±15用于心理社会和身体影响,分别为;p<0.01)。与未接受清洁间歇性导尿(CIC)的儿童相比,接受清洁间歇性导尿(CIC)的儿童的心理社会情绪影响存在显着差异(69±21vs.81±16;p=0.005)(表2)。此外,我们注意到患有PUV的儿童得分与健康对照相似,但高于患有其他慢性疾病的儿童。关于对家庭的影响,总的来说,父母,家庭影响分别为76±19、78±21和81±21。
结论:慢性病对成人和儿童的HRQoL均有负面影响。我们注意到本研究的类似发现,特别是对于幼儿和那些保持在CIC.据我们所知,这是第一项评估PUV对儿童HRQoL的影响以及对家庭的影响的研究,并记录CIC对该人群的负面心理社会影响。然而,有一些重要的局限性需要解决,包括在繁忙的诊所就诊期间依赖家庭准确完成问卷,以及缺乏来自相同环境的控制。
结论:与健康对照组相比,PUV患者在HRQoL评估中得分相似。此外,3岁以下的儿童报告对身体健康有负面影响,和CIC对情绪健康产生负面影响。这些数据可用于倡导为这些儿童提供更好的心理健康支持和社会工作。
BACKGROUND: Posterior urethral valves (PUV) is a chronic condition that can adversely impact child and family health related quality of life (HRQOL). Surprisingly, to date, the impact of this condition on the QOL of children with PUV has not been studied. Thus, our aim is to evaluate this important aspect of care using validated questionnaires in our institutional PUV clinic.
METHODS: From December 2022 to January 2024, the PedsQL Inventory and associated family impact module was distributed in our PUV clinic. Higher scores reflect better HRQoL and less impact on family. Children >8 years old completed the tool themselves, otherwise parents completed the tools on behalf of the child. We compared PUV scores against reported psychometric data from healthy children and other chronic illnesses.
RESULTS: A total of 112 families completed the questionnaires. The total HRQoL score was 80 ± 13. Overall, we noted that the domains reflecting psychosocial impact were significantly lower than those of physical well-being (76 ± 16 vs. 89 ± 15 for psychosocial and physical impact, respectively; p < 0.01). There was a significant difference in the psychosocial emotional impact for children managed with clean intermittent catheterization (CIC) compared to those who were not (69 ± 21 vs. 81 ± 16; p = 0.005) (Table 2). In addition, we noted that children with PUV scored similar to healthy controls, but higher than children with other chronic illnesses. With respect to the impact on family, overall, parent, and family impacts were 76 ± 19, 78 ± 21, and 81 ± 21, respectively.
CONCLUSIONS: Chronic illness has been associated with a negative impact on HRQoL in both adults and children. We noted similar findings the present study, particularly for young children and those who are maintained on CIC. To our knowledge, this is the first study to evaluate the impact of PUV on a child\'s HRQoL as well as the impact on the family, and to document a negative psychosocial impact of CIC in this population. However, there are some important limitations to be addressed including relying on families to complete questionnaires accurately during busy clinic visits and the lack of controls from the same environment.
CONCLUSIONS: When compared to healthy controls, PUV patients score similarly in HRQoL assessment. In addition, children <3years of age report a negative impact on physical well being, and CIC negatively impacts the emotional well-being. These data can be used to advocate for better mental health supports and social work for these children.