University of Colorado Anschutz Medical Campus 13001 E 17th Pl., Aurora, CO 80045, USA; Pediatric Urology Research Enterprise, Children's Hospital Colorado 13123 E 16th Ave., Aurora, CO 80045, USA.
University of Colorado Anschutz Medical Campus 13001 E 17th Pl., Aurora, CO 80045, USA; Pediatric Urology Research Enterprise, Children's Hospital Colorado 13123 E 16th Ave., Aurora, CO 80045, USA; Adult and Child Center for Outcomes Research and Delivery Science 1890 N Revere Ct., 3rd Fl., Aurora, CO 80045, USA.
J Pediatr Urol. 2024 Dec;20(6):1134-1141. doi: 10.1016/j.jpurol.2024.08.012. Epub 2024 Aug 31.
Surgical management for neurogenic bladder requires complex decision-making by physicians, patients, and caregivers. Assessing decisional regret (DR) as a patient-reported outcome among caregivers could inform future counseling and shared decision-making.
To assess DR among caregivers of children with neurogenic bladder following reconstructive bladder surgery.
A questionnaire including a validated DR survey was distributed to English-speaking caregivers of children with neurogenic bladder who had undergone reconstructive bladder surgery at Children's Hospital Colorado. DR scores range from zero to 100, with higher numbers indicating higher regret. Wilcoxon rank sum test and Spearman correlation were performed to assess differences in DR scores by patient demographic factors or disease factors.
Forty-five of 210 English-speaking caregivers completed the DR survey. The median DR score was 5, with 40% of subjects reporting with a DR score of zero and 24% of subjects with a DR score of 30 or higher. Patient sex and Mitrofanoff leakage were found to be associated with DR, with caregivers of male patients reporting significantly higher DR. Surgical procedure did not have a statistically significant impact on DR scores.
Sparse existing data exploring DR among patients with neurogenic bladder suggest DR following reconstructive bladder surgery is low, with few identifiable predictors of regret. While the majority of caregivers in our study report little or no DR, one quarter of caregivers report moderate to high DR. The limitations of this study include small cohort size, low response rate, exclusion of non-English speaking patients, and the potential for recall bias due to the survey design of the study.
Caregiver DR following bladder reconstruction in children with neurogenic bladder is generally low, however a subset of caregivers reports significant DR. This study suggests that caregivers of male children may have higher DR, a finding that merits further investigation.
神经源性膀胱的外科治疗需要医生、患者和护理人员进行复杂的决策。评估护理人员的决策后悔（DR）作为患者报告的结果，可以为未来的咨询和共同决策提供信息。
评估接受过重建性膀胱手术的神经源性膀胱儿童的护理人员的 DR。
向在科罗拉多儿童医院接受过重建性膀胱手术的神经源性膀胱儿童的英语护理人员发放了一份包含经过验证的 DR 调查的问卷。DR 评分范围从 0 到 100，分数越高表示后悔程度越高。采用 Wilcoxon 秩和检验和 Spearman 相关分析评估患者人口统计学因素或疾病因素对 DR 评分的差异。
210 名讲英语的护理人员中有 45 名完成了 DR 调查。DR 评分中位数为 5，40%的受试者报告 DR 评分为 0，24%的受试者报告 DR 评分为 30 或更高。患者性别和 Mitrofanoff 漏尿与 DR 相关，男性患者的护理人员报告的 DR 明显更高。手术方式对 DR 评分没有统计学显著影响。
探索神经源性膀胱患者 DR 的现有数据很少，表明重建性膀胱手术后的 DR 较低，后悔的可识别预测因素很少。虽然我们研究中的大多数护理人员报告的 DR 很少或没有，但四分之一的护理人员报告的 DR 为中度至高度。本研究的局限性包括样本量小、应答率低、排除非英语患者以及由于研究的调查设计可能存在回忆偏倚。
神经源性膀胱儿童接受膀胱重建术后，护理人员的 DR 总体较低，但有一部分护理人员报告了明显的 DR。这项研究表明，男性儿童的护理人员可能有更高的 DR，这一发现值得进一步研究。
