Universidade Federal de São Paulo, Escola Paulista de Medicina, Department of Obstetrics - São Paulo (SP), Brazil.
Universidade Federal de São Paulo, Escola Paulista de Medicina, Department of Preventive Medicine - São Paulo (SP), Brazil.
Rev Assoc Med Bras (1992). 2024 Jun 17;70(6):e20231327. doi: 10.1590/1806-9282.20231327. eCollection 2024.
The aim of this study was to understand the dynamics of families with children with myelomeningocele undergoing intrauterine fetal surgery.
A retrospective cohort pilot study was carried out with 11 mothers of children who had undergone intrauterine myelomeningocele repair. Participants in this study responded to an electronic questionnaire (via Google Forms), developed by the study authors, that consisted of 22 multiple-choice questions, of which 17 were closed-ended and 5 had a standardized format.
The mean (± standard deviation) of the mothers' age was 37.6 (± 3.5) years. The median of gestational age at delivery and birthweight were 34.9 (range, 33 to 36.1) weeks and 2,300 (range, 1,950 to 2,763) g, respectively. The majority of mothers were white (81.8%), had university degree (81.8%), were Catholic (63.6%), and were married (100%). The majority of mothers rated their relationship with their husband, family, and friends as excellent (54.5, 72.7, and 54.5%, respectively). All 11 mothers reported that the newborn with myelomeningocele was born <37 weeks gestation and the birthweight most often<2,500 g. Approximately 64% of the mothers reported that their child required adaptations or had special needs, of which walking aids (50%) and bladder control (50%) were the most common ones.
Telemedicine proved to be a useful tool in the long-term follow-up of children who underwent intrauterine surgery to correct myelomeningocele.
本研究旨在了解接受宫内胎儿手术的脊髓脊膜膨出患儿家庭的动态变化。
对 11 名接受宫内脊髓脊膜膨出修复术患儿的母亲进行了回顾性队列初步研究。本研究的参与者通过谷歌表格（Google Forms）回答了一份由研究作者编写的电子问卷，该问卷由 22 个多项选择题组成，其中 17 个为封闭式，5 个为标准化格式。
母亲的平均（±标准差）年龄为 37.6（±3.5）岁。分娩时的中位胎龄和出生体重分别为 34.9（范围 33 至 36.1）周和 2300（范围 1950 至 2763）g。大多数母亲为白人（81.8%）、拥有大学学历（81.8%）、为天主教徒（63.6%）且已婚（100%）。大多数母亲表示，她们与丈夫、家人和朋友的关系都非常好（分别为 54.5%、72.7%和 54.5%）。11 位母亲均报告新生儿患有脊髓脊膜膨出，胎龄<37 周，出生体重通常<2500g。约 64%的母亲报告说，她们的孩子需要适应或有特殊需求，其中最常见的是助行器（50%）和膀胱控制（50%）。
远程医疗被证明是一种有用的工具，可用于对接受宫内手术治疗脊髓脊膜膨出的儿童进行长期随访。
