Dataset Information

Estimated kidney function in children and young adults with spina bifida: A retrospective cohort study.

ABSTRACT:

Aims

Current estimated glomerular filtration rate (eGFR) equations may be inaccurate in patients with spina bifida (SB) because of reduced muscle mass and stature. Cross-sectional and longitudinal variability of eGFR were analyzed in these patients across multiple equations, hypothesizing greater variability in creatinine-based than cystatin-C (Cys-C)-based equations.

Methods

This retrospective cohort study included children (age, 1-17.9 years) and adults (≥18 years) with SB from 2002-2017 at a large SB clinic. Those without all data needed to calculate eGFR were excluded. Four pediatric and three adult eGFR equations were compared for cross-sectional outcomes of eGFR and elevated office blood pressures using chronic kidney disease (CKD) stage classification, and for longitudinal outcome of eGFR slope over time using covariance pattern models accounting for repeated measures.

Results

One hundred and eighty two children and 75 adults had greater than or equal to 1 set of data measurements; 118 and 52, respectively, had greater than or equal to 2 sets. The pediatric bedside Schwartz equation had the highest median eGFR and coefficient of variation. CKD stage classification by eGFR showed large differences across equations in children, with rates of eGFR < 60 and <90 ml/min/1.73 m² ranging from 2%-9% and 5%-69%, respectively. Only one equation showed a significant inverse association between eGFR and blood pressure. Longitudinally, eGFR slopes over time were different across pediatric equations (P < .001) but not adult equations. The bedside Schwartz equation had a positive eGFR slope; the other Cys-C-containing equations had negative slopes.

Conclusions

Creatinine-based equations in children with SB vary considerably from cystatin-C-containing equations in calculating both single point-in-time eGFR values and eGFR trends over time.

SUBMITTER: Chu DI

PROVIDER: S-EPMC6706288 | biostudies-literature | 2019 Sep

REPOSITORIES: biostudies-literature

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Publications

Estimated kidney function in children and young adults with spina bifida: A retrospective cohort study.

Chu David I DI Balmert Lauren C LC Arkin Cameron M CM Meyer Theresa T Rosoklija Ilina I Li Belinda B Hodgkins Kavita S KS Furth Susan L SL Cheng Earl Y EY Yerkes Elizabeth B EB Isakova Tamara T

Neurourology and urodynamics 20190708 7

<h4>Aims</h4>Current estimated glomerular filtration rate (eGFR) equations may be inaccurate in patients with spina bifida (SB) because of reduced muscle mass and stature. Cross-sectional and longitudinal variability of eGFR were analyzed in these patients across multiple equations, hypothesizing greater variability in creatinine-based than cystatin-C (Cys-C)-based equations.<h4>Methods</h4>This retrospective cohort study included children (age, 1-17.9 years) and adults (≥18 years) with SB from ...[more]

PMID: 31286557

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Project description:BackgroundSpina 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.MethodsThis 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.ResultsBetween 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%.ConclusionsThis 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.

Project description:BackgroundTransition to adulthood to live independently while self-managing health and daily life without parental help is crucial for young adults with chronic conditions. Despite its importance as a precursor to effectively managing lifelong conditions, little is known about the experiences of young adults with spina bifida (SB) in transition to adulthood in Asian countries. This study aimed to explore the experiences of Korean young adults with SB to identify the facilitators or barriers to the transition from adolescence to adulthood from their perspectives.MethodsThis study used a qualitative descriptive design. The data were collected in South Korea through three focus group interviews with 16 young adults with SB, aged 19-26, from August to November 2020. We conducted a qualitative content analysis using a conventional approach to identify the factors that facilitated and hindered the participants' transition to adulthood.ResultsTwo themes emerged as facilitators and barriers to the transition to adulthood. a) Facilitators: understanding and acceptance of SB, acquiring self-management skills, parenting styles encouraging autonomy, parents' emotional support, school teachers' thoughtful consideration, and participation in self-help groups. b) Barriers: overprotective parenting style, experience of being bullied by peers, damaged self-concept, concealing one's chronic condition from others, and the lack of privacy in school restrooms.ConclusionsKorean young adults with SB shared their experiences of struggling to properly manage their chronic conditions on their own, particularly concerning regular bladder emptying, during the transition from adolescence to adulthood. To facilitate the transition to adulthood, education on the SB and self-management for adolescents with SB and on parenting styles for their parents are important. To eliminate barriers to the transition to adulthood, improving negative perceptions of disability among students and teachers and making school restrooms CIC-friendly are needed.

Project description:BackgroundChildren with the severe form of spina bifida (SBM: spina bifida with myelomeningocele with accompanying hydrocephalus) may manifest attention deficits, and have a similar psychological profile to children with hydrocephalus due to other etiologies. It is unclear to what extent tests to assess attention in SBM are confounded by the accompanying cognitive or visual-motor impairments. The aim of this study was to analyse attention functions by administering two different types of attention tests, one with high and the other with low cognitive and motor requirements. This enabled the possible interaction between attention and cognitive and motor impairment to be assessed.MethodsThe study group comprised 31 children with SBM with shunted hydrocephalus. Twenty children with SB-only formed a closely matched comparison group. Of these, 19 children with SBM and 18 with SB had a full-scale IQ (FSIQ) higher than 70. All had undergone spinal surgery and all children with SBM had been shunted within the first months of life. Between 6 and 15 years of age, the children were assessed on focused and sustained attention, encoding, and distractibility/impulsivity, using both traditional tests and computerized attention tests.ResultsCompared to the SB group, attention scores of children with SBM were lower on the traditional tests, but when interfering cognitive and visual-motor requirements were eliminated using the computerised tasks, most differences disappeared. Furthermore, in contrast to traditional attention tasks, computerized tests showed no significant correlations with IQ-scores and visual-motor skills.ConclusionAssessment of attention functions in children with SBM by traditional tests may be misleading, because this paediatric population with complex cerebral malformations has difficulty with the cognitive and visual-motor requirements. To control for these interactions, the use of both traditional and computerized attention tests is recommended.

Dataset Information

Estimated kidney function in children and young adults with spina bifida: A retrospective cohort study.

Aims

Methods

Results

Conclusions

Publications

Estimated kidney function in children and young adults with spina bifida: A retrospective cohort study.

Similar Datasets

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