Supplementary Material for: Urinary and Fecal Continence in 5-Year-Old Patients Who Underwent in utero Myelomeningocele Repair: A Prospective Study

<b><i>Introduction:</i></b> After<b><i></i></b> the successful results of in utero myelomeningocele (MMC) repair presented by the Management of Myelomeningocele Study, the concept of fetal surgery was introduced in our institution in 2011. Since then, we have been able to follow prospectively a group of patients with attention to urological care. In the present study, we were interested in estimating urinary and fecal continence in this new subset of patients. <b><i>Material and Methods:</i></b><i></i> We selected from our database patients aged 5 years or older for evaluation of urinary and fecal continence. We reviewed all charts and completed a questionnaire to study aspects of urinary and fecal continence. <b><i>Results:</i></b> We identified 14 patients, i.e., 4 (28.6%) males and 10 (71.4%) females. The mean age at MMC surgery was 25.6 gestational weeks. The uro­dynamic class was high-risk in 6 (42.9%), incontinent in 4 (28.6%), hypocontractile in 1 (7.1%), and normal in 3 (21.4%) patients. Three patients had undergone surgery (2 augmentations, i.e., 1 in association with a left colon ACE Macedo-Malone procedure and 1 mini-sling urethroplasty). Twelve patients underwent clean intermittent catheterization (CIC) (85.7%). Only 3 (21.4%) patients had no urinary leakage. Eleven patients (78.6%) used diapers. Eight patients (57.2%) underwent retrograde rectal irrigation and 11 (78.6%) complained of fecal loss. Eleven patients (78.6%) did not report an impact on their self-esteem. <b><i>Conclusion:</i></b> Despite the use of CIC in 85.7% of the cases, the continence rate in MMC patients operated on in utero was low and 78.6% of the patients used diapers. This data can be used to educate parents about future conditions of their 5-year-old children and may stimulate the debate regarding further attempts (surgical or not) to improve fecal and urinary continence.

**引言**：脊髓脊膜膨出管理研究（Management of Myelomeningocele Study）报道了宫内脊髓脊膜膨出（myelomeningocele, MMC）修复术的成功疗效后，本机构于2011年引入胎儿外科手术理念。自此，我们对一组患者开展了前瞻性随访，并重点关注其泌尿专科护理。本研究旨在评估该新队列患者的大小便控尿与控便功能。

**材料与方法**：我们从本中心数据库中筛选年龄≥5岁的患者，对其大小便控尿、控便功能进行评估。我们查阅了所有病历资料，并填写调查问卷以分析大小便控尿、控便功能相关指标。

**结果**：本研究共纳入14例患者，其中男性4例（28.6%），女性10例（71.4%）。患者接受MMC修复术时的平均孕周为25.6周。尿动力学分级结果显示：高危6例（42.9%），尿失禁4例（28.6%），膀胱收缩功能低下1例（7.1%），尿动力学正常3例（21.4%）。3例患者接受了手术治疗：2例行膀胱扩大术，其中1例联合左结肠Macedo-Malone顺行灌肠术，另1例行微型吊带尿道成形术。12例患者接受了清洁间歇导尿术（clean intermittent catheterization, CIC），占比85.7%；仅3例（21.4%）患者无尿漏症状。11例（78.6%）患者需使用纸尿裤。8例（57.2%）患者接受了逆行直肠灌洗，11例（78.6%）患者存在大便失禁症状。11例（78.6%）患者自述未受自尊问题困扰。

**结论**：尽管85.7%的患者接受了清洁间歇导尿术，宫内手术治疗的脊髓脊膜膨出患者的大小便控尿控便成功率仍较低，且78.6%的患者仍需使用纸尿裤。本研究数据可用于向患儿家长宣教其5岁子女的后续健康状况，同时可为进一步探讨改善大小便控尿、控便功能的手术或非手术干预方案提供学术参考依据。