The University of Manchester, United Kingdom.
Royal Manchester Children's Hospital, Manchester University NHS Foundation Trust, United Kingdom.
J Pediatr Urol. 2024 Aug;20(4):643.e1-643.e8. doi: 10.1016/j.jpurol.2024.04.014. Epub 2024 Apr 29.
Bladder Exstrophy and Epispadias Complex (BEEC) is associated with psychosocial difficulties. Screening questionnaires, alongside consultation with a clinical psychologist, can help identify children/young people for further assessment and track trends over time to improve service delivery.
To screen paediatric BEEC patients for a range of general psychosocial difficulties in a multi-disciplinary out-patient clinic setting and compare these results with our previous study and against published norms.
The current service evaluation collected data at outpatient BEEC clinic appointments between 2016 and 2022 (2016-2022 sample). Children aged 4-5, 10-11 and 14-15 years and their parents/proxy were asked to complete two standardised psychosocial questionnaires: Paediatric Quality of Life Inventory (PedsQL 4.0 Generic Core and Family Impact Module) and the Strengths and Difficulties Questionnaires (SDQ). 79 children (CYP) and 93 parent/proxy (P/P) responses were recorded. The sample included paired CYP and P/P responses for the PedsQL (n = 67) and SDQ (n = 35). The mean age for CYP was 9.9 years (SD 3.99, range 2-17), 69.8% (n = 120) of responses for male children.
The percentage of total CYP scores falling within the 'At Risk' category on the PedsQL increased in the 2016-2022 sample compared to our 2015 sample, indicating the prevalence of greater difficulties. Differences between P/P and CYP responses on both the PedsQL and SDQ favoured CYP. Age, gender, and diagnosis appeared to influence certain questionnaire responses, depending on respondent (CYP or P/P). A significant difference between P/P and CYP in the emotional domain of the PedsQL for those aged 13-18 was observed (p = 0.020), with P/P reporting greater difficulties, but this was not seen in the younger age ranges. Physical Health on the PedsQL were significantly lower for children with a cloacal exstrophy diagnosis, in comparison to bladder exstrophy and epispadias. P/P SDQ scores for boys were significantly higher in several domains.
The results demonstrate the need for psychosocial screening, providing benchmarking for psychosocial difficulties within this patient group. Results indicate that patients accessing our clinic are reporting a higher level of challenge across psychosocial domains in recent years reflected by the percentage within the 'At Risk' category for psychosocial difficulty. Linked questionnaire data with condition specific information and surgical history would improve service evaluations. CYP reaching clinical thresholds are offered further psychological assessment within the service.
膀胱外翻和尿道上裂复合畸形（BEEC）与社会心理困难有关。筛查问卷以及与临床心理学家的咨询可以帮助识别需要进一步评估的儿童/青少年，并跟踪随时间推移的趋势，以改善服务提供。
在多学科门诊环境下，对儿科 BEEC 患者进行一系列一般社会心理困难的筛查，并将这些结果与我们之前的研究以及已发表的标准进行比较。
本次服务评估在 2016 年至 2022 年期间（2016-2022 年样本）的 BEEC 门诊就诊时收集数据。4-5 岁、10-11 岁和 14-15 岁的儿童及其父母/监护人被要求完成两份标准化社会心理问卷：儿科生活质量问卷（PedsQL 4.0 通用核心和家庭影响模块）和长处和困难问卷（SDQ）。记录了 79 名儿童（CYP）和 93 名父母/监护人（P/P）的 93 个响应。该样本包括 PedsQL （n=67）和 SDQ （n=35）中配对的 CYP 和 P/P 响应。CYP 的平均年龄为 9.9 岁（SD 3.99，范围 2-17），69.8%（n=120）的反应为男性儿童。
与我们 2015 年的样本相比，2016-2022 年样本中 PedsQL 总分处于“风险”类别的 CYP 百分比增加，表明困难程度更大。PedsQL 和 SDQ 上 P/P 和 CYP 之间的反应差异有利于 CYP。年龄、性别和诊断似乎会根据响应者（CYP 或 P/P）影响某些问卷的响应。在 13-18 岁的人群中，PedsQL 的情感领域中观察到 P/P 和 CYP 之间存在显著差异（p=0.020），P/P 报告了更大的困难，但在较小的年龄范围内没有观察到这种情况。与膀胱外翻和尿道上裂相比，会阴裂孔外翻患者的 PedsQL 生理健康得分明显较低。男孩的 P/P SDQ 得分在几个领域显著较高。
结果表明需要进行社会心理筛查，为该患者群体的社会心理困难提供基准。结果表明，近年来，在我们诊所就诊的患者在社会心理领域报告了更高水平的挑战，这反映在处于“风险”类别的百分比，即存在社会心理困难的风险。将问卷调查数据与特定疾病的信息和手术史相关联，将提高服务评估。在服务范围内，达到临床阈值的 CYP 患者将接受进一步的心理评估。
