Yun Hyeseon, Yang Seung Hyeon, Lee Hooyun, Kim Sang Woon, Lee Yong Seung, Ji Yoonhye, Park Jieun, Ji Jeong-Eun, Choi Eun Kyoung
College of Nursing and Brain Korea 21 FOUR Project, Yonsei University, Seoul, South Korea.
Department of Urology, Yonsei University College of Medicine, Seoul, South Korea.
BMC Pediatr. 2024 Dec 3;24(1):791. doi: 10.1186/s12887-024-05229-5.
Spina bifida (SB) is a chronic condition requiring lifelong self-management, underscoring the need to establish a dedicated cohort for longitudinal monitoring of health outcomes. The purpose of this study was to describe the development and initial implementation of a single-center prospective cohort study of children with SB and their parents living in South Korea and to describe demographics, clinical outcomes, psychosocial characteristics, and family data for this cohort.
This cohort was established through expert panel formation, identification of health indicators based on the Life Course Model for Spina Bifida, creation of a cohort database system, and quality control planning. Participants, children aged 4-12 years with SB and their parents, were recruited from a large SB clinic at a tertiary hospital in South Korea. Two approaches were used to collect data: (1) diagnosis and clinical outcomes (e.g., lesion level, surgical history, laboratory results) were collected from the electronic medical record by pediatric nurse practitioners and (2) demographics, psychosocial characteristics and family data were collected from online self-reported questionnaires completed by children with SB and their parents if the child with SB was aged 7-12 years and by only the parents if the child with SB was aged 4-6 years.
Between September 2022 and September 2023, 162 children (mean age 7.6 ± 2.6 years) and their parents participated, with 35.8% (4-6 years), 29% (7-9 years), and 35.2% (10-12 years). Diagnoses included lipomyelomeningocele (51.2%), myelomeningocele (27.2%), and tethered cord syndrome (20.4%). Clean intermittent catheterization was used by 38.3% and enemas by 22.2%. Moreover, 30.9% experienced urinary incontinence and 26.5% experienced fecal incontinence. Ambulation assistive devices were used by 14.8%, and ventriculoperitoneal shunts by only 4.3%.
This cohort provides a comprehensive understanding of demographics, and clinical and psychosocial outcomes for children with SB in South Korea. The dataset offers opportunities for data-driven, life-course tailored interventions to meet the specific needs of this population and their families.
脊柱裂（SB）是一种需要终身自我管理的慢性疾病，这凸显了建立一个专门队列以对健康结果进行纵向监测的必要性。本研究的目的是描述一项针对韩国患有脊柱裂的儿童及其父母的单中心前瞻性队列研究的开展和初步实施情况，并描述该队列的人口统计学特征、临床结局、心理社会特征和家庭数据。
该队列通过组建专家小组、基于脊柱裂生命历程模型确定健康指标、创建队列数据库系统以及质量控制规划来建立。参与者为韩国一家三级医院大型脊柱裂诊所招募的4至12岁患有脊柱裂的儿童及其父母。采用两种方法收集数据：（1）儿科执业护士从电子病历中收集诊断和临床结局（如病变水平、手术史、实验室检查结果）；（2）如果患有脊柱裂的儿童年龄在7至12岁，则通过在线自我报告问卷收集其人口统计学特征、心理社会特征和家庭数据，如果患有脊柱裂的儿童年龄在4至6岁，则仅由其父母填写问卷收集相关数据。
在2022年9月至2023年9月期间，162名儿童（平均年龄7.6±2.6岁）及其父母参与其中，其中35.8%（4至6岁）、29%（7至9岁）和35.2%（10至12岁）。诊断包括脂肪瘤型脊髓脊膜膨出（51.2%）、脊髓脊膜膨出（27.2%）和脊髓栓系综合征（20.4%）。38.3%的儿童使用清洁间歇性导尿，22.2%的儿童使用灌肠。此外，30.
