Kurian Jujju Jacob, Jacob Tarun John K, Mathai John
Department of Paediatric Surgery, Christian Medical College, Vellore, Tamil Nadu, India.
J Indian Assoc Pediatr Surg. 2019 Jan-Mar;24(1):21-26. doi: 10.4103/jiaps.JIAPS_195_17.
It is often a challenge to counsel parents with children operated for spina bifida aperta in developing countries. Data regarding the efficacy of simple measures and preventive are scarce.
The aim of this study is to study such children for the incidence, prevalence of bowel bladder dysfunction, and the quality of life (QOL) in children who are involved with a multidisciplinary team in India.
All children with spina bifida occulta were followed - QOL questionnaires (PIN Q, modified Barthels activities of daily living , and the visual analog score [VAS]) were used. Interventions, such as clean intermittent catheterization (CIC), bowel enemas, and surgical procedures, were studied.
A total of 68 children were assessed. Twenty-nine of these children over five were evaluated with QOL scores. The prevalence of incontinence of bowel and bladder was studied. The primary outcomes included the QOL scores, and the various surgical options help bowel and bladder management. Hydronephrosis in 17.95% of children <5 years and 65.5% of children over 5 years was noted. Nineteen children were socially independent for their bowel management. The Barthel index and PIN-Q showed a poor QOL in 27.6% and the VAS in 34.5% had the same. This translated to an acceptable QOL for over two-thirds of the children.
Simple procedures and training for bowel management translate to a significant number of children being able to independently manage bowel care. About 30% of children develop hydronephrosis by 5 years; the decision to teach CIC must be made by then. We believe that positive counseling is given to the parents of children with spina bifida aperta as the children are capable of a reasonable QOL.
在发展中国家,为患有开放性脊柱裂并接受手术治疗的孩子的家长提供咨询往往具有挑战性。关于简单措施和预防效果的数据稀缺。
本研究旨在对印度参与多学科团队的此类儿童进行膀胱肠道功能障碍的发病率、患病率及生活质量(QOL)的研究。
对所有隐性脊柱裂儿童进行随访——使用生活质量问卷(PIN Q、改良巴氏日常生活活动量表以及视觉模拟评分[VAS])。研究了清洁间歇性导尿(CIC)、肠道灌肠和外科手术等干预措施。
共评估了68名儿童。其中29名五岁以上儿童进行了生活质量评分评估。研究了膀胱肠道失禁的患病率。主要结果包括生活质量评分以及各种有助于膀胱肠道管理的手术选择。注意到17.95%的五岁以下儿童和65.5%的五岁以上儿童患有肾积水。19名儿童在肠道管理方面实现了社会独立。巴氏指数和PIN-Q显示27.6%的儿童生活质量较差,VAS显示34.5%的儿童生活质量较差。这意味着超过三分之二的儿童生活质量尚可接受。
简单的肠道管理程序和培训使得大量儿童能够独立管理肠道护理。约30%的儿童到五岁时会出现肾积水;届时必须决定是否教授CIC。我们认为,鉴于患有开放性脊柱裂的儿童能够拥有合理的生活质量,应给予其家长积极的咨询。