成人泄殖腔畸形手术的综合功能和生活质量结果

IF 2.4 2区医学 Q1 PEDIATRICS

Journal of pediatric surgery Pub Date : 2024-10-01 DOI:10.1016/j.jpedsurg.2024.161981

L. Örtqvist , G. Holmdahl , H. Borg , K. Bjornland , H. Lilja , P. Stenström , N. Qvist , T. Sæther Hagen , M. Pakarinen , T. Wester , R. Rintala

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引用次数: 0

摘要

简介：泄殖腔畸形泄殖腔畸形的复合长期结果仍不清楚。我们旨在评估成年后的肠道和膀胱控制能力、性功能、生殖健康和生活质量：我们开展了一项北欧多中心横断面观察研究，评估泄殖腔畸形成年患者的预后。患者特征来自病例记录。向患者发送了既定问卷，以评估肠道、膀胱和性功能以及生活质量：48名符合条件的患者中有34名（70%）做出了回应，中位年龄为28岁（18-45岁）。8名患者（24%）的共同通道大于3厘米。经影像学确诊的脊柱和骶骨异常患者分别为 4 人和 17 人。85%的患者（n = 29/34，排除了 4 名膀胱颈闭合后有永久性尿流改道的患者）表示在没有体力活动或尿意的情况下没有漏尿。三名患者接受了永久性肠造口术。根据肠道功能评分，42%（n = 11/26）的患者报告肠道功能可接受（最终持续进行肠道管理）。女性性功能评分中位数低于标准值。患者的生活质量与参照人群相当，但有 30% 的患者的生活质量属于痛苦范畴。8名患者（24%）曾怀孕（15次），其中7次为活产，但需要辅助生殖技术（40%，n = 6/15）和流产（40%，n = 6/15）的情况很常见：结论：完全自发的肠道控制非常罕见，而大多数患者无需额外手术即可排干尿液。泄殖腔畸形还会对性功能、与健康相关的生活质量和生殖健康造成负面影响。长期随访至关重要，不仅要关注肠道和膀胱功能，还要关注性功能和生殖功能，这可能是影响健康相关生活质量的重要负面因素：证据等级：IV 级。

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Composite Functional and Quality of Life Outcomes in Adults Operated for Cloacal Malformation

Introduction

Composite long-term outcomes of cloacal malformations remain unclear. We aimed to evaluate bowel and bladder control, sexual function, reproductive health, and quality of life in adulthood.

Methods

A Nordic multi-center cross-sectional observational study evaluating the outcome of adult patients with cloacal malformations was performed. Patient characteristics were retrieved from case records. Established questionnaires were sent to the patients to evaluate bowel- bladder- and sexual function and quality of life.

Results

Thirty-four of 48 (70%) eligible patients with median age 28 years (18–45) responded. Eight (24%) patients had a common channel >3 cm. Imaging-confirmed spinal and sacral abnormalities were present in 4 and 17 patients respectively. 85% (n = 29/34, four patients with permanent urinary diversions after bladder neck closure excluded) reported no urinary leakage without physical activity or urge to urinate. Three patients had a permanent enterostomy. 42 % (n = 11/26) reported acceptable bowel function according to Bowel Function Score (with eventual ongoing bowel management). The median Profile of Female Sexual Function Score was below normative values. Quality of life was comparable to the reference population, but thirty percent scored within the distress domains. Eight patients (24%) had been pregnant (15 pregnancies), resulting in seven live births, but the need of assisted reproduction techniques (40%, n = 6/15) and miscarriage (40%, n = 6/15) was common.

Conclusions

Adequate spontaneous bowel control was rare, while most patients were dry for urine without additional procedures. Cloacal malformation also have a negative impact on sexual function health related quality of life and reproductive health. Long-term follow-up is crucial, not only regarding bowel and bladder function, but also for sexual and reproductive function, which may be important negative factors for health-related quality of life.

Level of Evidence

Level IV.

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来源期刊

Journal of pediatric surgery 医学-外科

CiteScore

1.10

自引率

12.50%

发文量

569

审稿时长

38 days

期刊介绍： The journal presents original contributions as well as a complete international abstracts section and other special departments to provide the most current source of information and references in pediatric surgery. The journal is based on the need to improve the surgical care of infants and children, not only through advances in physiology, pathology and surgical techniques, but also by attention to the unique emotional and physical needs of the young patient.