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Clinical profile of Korean children with spina bifida: a single-center prospective cohort study
Hyeseon Yun1, Seung Hyeon Yang1, Hooyun Lee1
1College of Nursing and Brain Korea 21 FOUR Project, Yonsei University, Seoul, South Korea.
Insights
This study established a South Korean spina bifida (SB) cohort, detailing demographics, clinical outcomes, and psychosocial factors. The data will inform tailored interventions for children with SB and their families.
Area of Science:
- Pediatric Health
- Chronic Condition Management
- Longitudinal Studies
Background:
- Spina bifida (SB) is a chronic condition requiring lifelong self-management.
- Longitudinal monitoring of health outcomes is crucial for SB patient care.
- A dedicated cohort is needed to track SB patient health trajectories.
Purpose of the Study:
- To describe the development and initial implementation of a prospective cohort study for children with SB in South Korea.
- To characterize the demographics, clinical outcomes, psychosocial characteristics, and family data of this cohort.
- To lay the groundwork for data-driven, life-course tailored interventions.
Main Methods:
- Expert panel formation and identification of key health indicators based on the Life Course Model for Spina Bifida.
- Establishment of a dedicated cohort database system with quality control measures.
- Recruitment of 162 children (4-12 years) with SB and their parents from a tertiary hospital in South Korea.
Main Results:
- The cohort includes 162 children with SB, with diagnoses including lipomyelomeningocele (51.2%), myelomeningocele (27.2%), and tethered cord syndrome (20.4%).
- Clinical data reveal significant prevalence of urinary (30.9%) and fecal incontinence (26.5%), with 38.3% using clean intermittent catheterization.
- Psychosocial and family data were collected via self-reported questionnaires, providing a comprehensive patient profile.
Conclusions:
- This prospective cohort study provides a comprehensive understanding of the demographics, clinical, and psychosocial outcomes for children with SB in South Korea.
- The established dataset offers valuable opportunities for developing data-driven, life-course tailored interventions.
- The findings will help meet the specific needs of the pediatric SB population and their families.
Background:
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.
Methods:
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.
Results:
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%.
Conclusions:
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.
