Paediatric Surgical Unit, Sheffield Children's NHS Foundation Trust, Sheffield, S10 2TH, UK.
The Medical School, University of Sheffield, Sheffield, S10 2RX, UK.
Pediatr Surg Int. 2024 Apr 3;40(1):95. doi: 10.1007/s00383-024-05684-2.
Assess long-term quality of life (QoL), bowel and voiding function in anorectal malformation (ARM) paediatric patients.
Retrospective review of ARM patients between 2007 and 2020 was performed. QoL (all patients), bowel and voiding function (> 5 yo) were assessed using the paediatric quality of life inventory (PedsQL), paediatric incontinence and constipation score (PICS) and dysfunctional voiding scoring system (DVSS), respectively.
There were 122 patients (49% female, 85 > 5 yo) with ARM. Two had died, four refused, twenty-two were non-contactable, leaving ninety-four patients (65 > 5 yo) included. Mean age was 89 months (19-183), and follow-up was 86 months (13-183). Patients had significantly poorer scores for QoL, bowel and voiding function compared to published healthy controls. 57% had poor bowel function, 32% had poor voiding function and 38% required 'ancillary aids' to facilitate function. Patients using 'ancillary aids' for voiding function had a significantly lower QoL (parent: 62 vs 77; p = 0.01, patient: 66 vs 79; p = 0.05). Bowel continence was worse in those with high vs low ARM (13 vs 20, p = 0.004) and timely vs delayed diagnosis (17 vs 24, p = 0.04).
Patients with ARM have significantly worse QoL, bowel and voiding function than normal healthy controls. There is a need for long-term monitoring of function and further support for these children.
III.
评估肛门直肠畸形（ARM）儿科患者的长期生活质量（QoL）、肠功能和排尿功能。
对 2007 年至 2020 年间的 ARM 患者进行回顾性研究。使用儿童生活质量量表（PedsQL）、儿童失禁和便秘评分（PICS）和排尿功能障碍评分系统（DVSS）分别评估所有患者的 QoL、肠功能和排尿功能（＞5 岁）。
共有 122 名患者（49%为女性，85 名＞5 岁）患有 ARM。2 名患者死亡，4 名患者拒绝，22 名患者无法联系，最终有 94 名（65 名＞5 岁）患者纳入研究。患者的平均年龄为 89 个月（19-183 个月），随访时间为 86 个月（13-183 个月）。与已发表的健康对照组相比，患者的 QoL、肠功能和排尿功能评分明显较差。57%的患者存在肠功能不良，32%的患者存在排尿功能不良，38%的患者需要“辅助器具”来辅助功能。使用“辅助器具”排尿的患者 QoL 明显较低（父母：62 分比 77 分；p=0.01，患者：66 分比 79 分；p=0.05）。高 ARM 组患者的排便控制能力较 ARM 低组差（13 比 20，p=0.004），且早期诊断组较延迟诊断组差（17 比 24，p=0.04）。
与正常健康对照组相比，ARM 患者的 QoL、肠功能和排尿功能明显较差。需要对这些儿童进行长期功能监测和进一步支持。
III 级。
