Postfolate spina bifida lesion level change

2018 ◽  
Vol 110 (11) ◽  
pp. 949-955
Author(s):  
Carin Eldridge ◽  
Sruti Bandlamuri ◽  
Jennifer G. Andrews ◽  
Maureen Kelly Galindo ◽  
Dianna Contreras ◽  
...  
Keyword(s):  
Spina Bifida ◽  
Level Change ◽  
Lesion Level

Tethered spinal cord among individuals with myelomeningocele: an analysis of the National Spina Bifida Patient Registry

2021 ◽  
Vol 28 (1) ◽  
pp. 21-27
Author(s):  
Mark S. Dias ◽  
Ming Wang ◽  
Elias B. Rizk ◽  
Robin Bowman ◽  
Michael D. Partington ◽  
...  
Keyword(s):  
Spinal Cord ◽  
Spina Bifida ◽  
Cox Proportional Hazards ◽  
Patient Registry ◽  
Tethered Spinal Cord ◽  
Significant Treatment ◽  
Data Set ◽  
Traditional Concept ◽  
Lesion Level ◽  
Males And Females

OBJECTIVE The aims of this study were to review the National Spina Bifida Patient Registry (NSBPR) data set to study the rates of tethered spinal cord release (TCR) among patients with myelomeningocele and variability between centers, to compare TCR rates between males and females, and to study the relationships between TCR rates and other condition-specific characteristics. METHODS The NSBPR registry was queried to identify all patients with myelomeningocele. TCR rates were calculated over time using survival analyses; rates between centers and between males and females were compared. Cox proportional hazards models were constructed to identify relationships between TCR rates and sex, functional lesion level, ambulation status, treated hydrocephalus, and prior Chiari decompression. RESULTS Of 6339 patients with information about their operations, 1366 (21.5%) underwent TCR, with significant variability between centers. The majority (75.8%) underwent a single TCR. The annual TCR rate was linear between birth and 13 years (1.8%/year) but declined sharply from 14 to 21 years (0.7%/year). There was no period of time at which the TCR rate accelerated. There were no significant differences in TCR rates between males and females. TCR rate was not related to functional lesion level but was lower among nonambulators compared with community ambulators (p = 0.005) and among those with treated hydrocephalus (HR 0.30, p < 0.001), and higher among those having prior Chiari decompression (HR 1.71, p < 0.001). CONCLUSIONS These results extend the results of prior single-institution studies, demonstrate significant treatment variability between institutions, and challenge the traditional concept that tethering is related to spinal cord stretching due to spinal growth.

Scope of care in the first four years of life for individuals born with myelomeningocele: A single institution experience1

2021 ◽  
pp. 1-7
Author(s):  
Betsy Hopson ◽  
Isaac Shamblin ◽  
Kathrin Zimmerman ◽  
Brandon Rocque ◽  
Arsalaan Salehani ◽  
...  
Keyword(s):  
Spina Bifida ◽  
Surgical Procedures ◽  
Hospital Admissions ◽  
Demographic Data ◽  
Newborn Infants ◽  
Surgical Care ◽  
Primary Diagnosis ◽  
Lesion Level ◽  
The Mean ◽  
Hospital Visits

PURPOSE: Children with myelomeningocele are known to be consumers of substantial healthcare resources, with many early hospital encounters. The purpose of this study was to survey the extent of medical and surgical care that patients with myelomeningocele receive during the first four years of life. METHODS: Clinical and demographic data were collected on newborn infants with open myelomeningocele from the Children’s of Alabama Spina Bifida Web Tracker, a prospective, comprehensive spina bifida database. Additional data pertaining to all hospital admissions, surgical procedures, and clinic visits were collected from the medical record. RESULTS: One hundred and fourteen subjects with a primary diagnosis of myelomeningocele between 2004 and 2015 were included. Males slightly predominated (55%), 72%were Caucasian, 11%Hispanic/Latino; 28%had a mid-lumbar functional lesion level. Over the first four years of life, 688 total surgical procedures were performed (an average of 86 per child): 438 in year 1, 100 in year 2, 84 in year 3, and 66 in year 4. The mean number of hospital visits was 40.5. Total average drive time per patient over 4 years being 103.8 hours. Average number of nights spent in the hospital was 51. CONCLUSION: Children with myelomeningocele need multiple hospitalizations, surgeries, and medical encounters in the first 4 years of life. These data will be valuable when counselling new parents and prospective parents of children with this condition.

scholarly journals Increased Asymmetry of Trunk, Pelvis, and Hip Motion during Gait in Ambulatory Children with Spina Bifida

Symmetry ◽  
2021 ◽  
Vol 13 (9) ◽  
pp. 1595
Author(s):  
Melissa A. Bent ◽  
Eva M. Ciccodicola ◽  
Susan A. Rethlefsen ◽  
Tishya A. L. Wren
Keyword(s):  
Spina Bifida ◽  
Muscle Weakness ◽  
Neural Tube Closure ◽  
Assistive Device ◽  
Trunk Motion ◽  
Lumbar Level ◽  
Hip Motion ◽  
Motor Strength ◽  
Lesion Level ◽  
And Function

Spina bifida (SB) is caused by incomplete neural tube closure and results in multiple impairments, including muscle weakness. The severity of muscle weakness depends on the neurologic lesion level. Though typically symmetric, there can be asymmetries in neurologic lesion level, motor strength, skeletal structures, and body composition that affect patients’ gait and function. Using body segment and joint motion obtained through 3D computerized motion analysis, we evaluated asymmetry and range of motion at the hip, pelvis, and trunk in the frontal and transverse planes during gait in 57 ambulatory children with SB and 48 typically developing controls. Asymmetry and range of hip, pelvis, and trunk motion in the frontal and transverse planes were significantly greater for patients with mid-lumbar and higher level lesions compared with those having sacral/low-lumbar level lesions and controls without disability (p ≤ 0.01). Crutch use decreased asymmetry of trunk rotation in mid-lumbar level patients from 10.5° to 2.6° (p ≤ 0.01). Patients with asymmetric involvement (sacral level on one side and L3-4 on the other) functioned similarly to sacral level patients, suggesting that they may be better categorized using their stronger side rather than their weaker side as is traditional. The information gained from this study may be useful to clinicians when assessing bracing and assistive device needs for patients with asymmetric SB involvement.

scholarly journals Treated hydrocephalus in individuals with myelomeningocele in the National Spina Bifida Patient Registry

2018 ◽  
Vol 22 (6) ◽  
pp. 646-651 ◽  
Author(s):  
Irene Kim ◽  
Betsy Hopson ◽  
Inmaculada Aban ◽  
Elias B. Rizk ◽  
Mark S. Dias ◽  
...  
Keyword(s):  
Logistic Regression ◽  
Spina Bifida ◽  
Temporal Trends ◽  
Patient Registry ◽  
Insufficient Data ◽  
Multivariate Logistic Regression ◽  
Significant Difference ◽  
Lesion Level ◽  
Hydrocephalus Treatment ◽  
The Relationship

OBJECTIVEAlthough the majority of patients with myelomeningocele have hydrocephalus, reported rates of hydrocephalus treatment vary widely. The purpose of this study was to determine the rate of surgical treatment for hydrocephalus in patients with myelomeningocele in the National Spina Bifida Patient Registry (NSBPR). In addition, the authors explored the variation in shunting rates across NSBPR institutions, examined the relationship between hydrocephalus, and the functional lesion level of the myelomeningocele, and evaluated for temporal trends in rates of treated hydrocephalus.METHODSThe authors queried the NSBPR to identify all patients with myelomeningoceles. Individuals were identified as having been treated for hydrocephalus if they had undergone at least 1 hydrocephalus-related operation. For each participating NSBPR institution, the authors calculated the proportion of patients with treated hydrocephalus who were enrolled at that site. Logistic regression was performed to analyze the relationship between hydrocephalus and the functional lesion level of the myelomeningocele and to compare the rate of treated hydrocephalus in children born before 2005 with those born in 2005 or later.RESULTSA total of 4448 patients with myelomeningocele were identified from 26 institutions, of whom 3558 patients (79.99%) had undergone at least 1 hydrocephalus-related operation. The rate of treated hydrocephalus ranged from 72% to 96% among institutions enrolling more than 10 patients. This difference in treatment rates between centers was statistically significant (p < 0.001). Insufficient data were available in the NSBPR to analyze reasons for the different rates of hydrocephalus treatment between sites. Multivariate logistic regression demonstrated that more rostral functional lesion levels were associated with higher rates of treated hydrocephalus (p < 0.001) but demonstrated no significant difference in hydrocephalus treatment rates between children born before versus after 2005.CONCLUSIONSThe rate of hydrocephalus treatment in patients with myelomeningocele in the NSBPR is 79.99%, which is consistent with the rates in previously published literature. The authors’ data demonstrate a clear association between functional lesion level of the myelomeningocele and the need for hydrocephalus treatment.

Spinal lesion level in spina bifida: a source of neural and cognitive heterogeneity

2005 ◽  
Vol 102 (3) ◽  
pp. 268-279 ◽  
Author(s):  
Jack M. Fletcher ◽  
Kim Copeland ◽  
Jon A. Frederick ◽  
Susan E. Blaser ◽  
Larry A. Kramer ◽  
...  
Keyword(s):  
Spina Bifida ◽  
Spinal Lesion ◽  
Lesion Level ◽  
Cognitive Heterogeneity

scholarly journals Pathways by which Maternal Factors are Associated With Youth Spina Bifida-Related Responsibility

2020 ◽  
Vol 45 (6) ◽  
pp. 610-621
Author(s):  
Colleen F Bechtel Driscoll ◽  
Diana M Ohanian ◽  
Monique M Ridosh ◽  
Alexa Stern ◽  
Elicia C Wartman ◽  
...  
Keyword(s):  
Spina Bifida ◽  
Study Data ◽  
Maternal Factors ◽  
Youth Outcomes ◽  
Mediation Analyses ◽  
Medical Responsibility ◽  
Observational Measure ◽  
Adjustment Factors ◽  
Lesion Level ◽  
The Relationship

Abstract Objective Achieving condition-related autonomy is an important developmental milestone for youth with spina bifida (SB). However, the transfer of condition-related responsibility to these youth can be delayed due to parent factors. This study aimed to investigate two potential pathways by which maternal factors may be associated with condition-related responsibility among youth with SB: (a) Maternal adjustment → perception of child vulnerability (PPCV) → youth condition-related responsibility; and (b) Maternal PPCV → overprotection → youth condition-related responsibility. Methods Participating youth with SB (N = 140; Mage=11.4 years, range = 8–15 years) were recruited as part of a longitudinal study; data from three time points (each spaced 2 years apart) from the larger study were used. Mothers reported on personal adjustment factors, PPCV, and overprotection. An observational measure of overprotection was also included. Mothers, fathers, and youth with SB reported on youths’ degree of responsibility for condition-related tasks. Analyses included age, lesion level, IQ, and the dependent variables at the prior wave as covariates. Results Bootstrapped mediation analyses revealed that PPCV significantly mediated the relationship between maternal distress and youth responsibility for medical tasks such that higher levels of distress at Time 1 predicted higher levels of PPCV at Time 2 and lower youth medical responsibility at Time 3. Furthermore, self-reported maternal overprotection significantly mediated the relationship between maternal PPCV and youth responsibility for medical tasks. Conclusions Maternal personal distress, PPCV, and self-reported overprotection are interrelated and affect youth’s condition-related responsibility. Interventions for mothers of youth with SB that target these factors may improve both maternal and youth outcomes.

scholarly journals Decompression for Chiari malformation type II in individuals with myelomeningocele in the National Spina Bifida Patient Registry

2018 ◽  
Vol 22 (6) ◽  
pp. 652-658 ◽  
Author(s):  
Irene Kim ◽  
Betsy Hopson ◽  
Inmaculada Aban ◽  
Elias B. Rizk ◽  
Mark S. Dias ◽  
...  
Keyword(s):  
Logistic Regression ◽  
Spina Bifida ◽  
Significant Relationship ◽  
Chiari Malformation ◽  
Patient Registry ◽  
Type Ii ◽  
History Of ◽  
Chiari Ii ◽  
Lesion Level ◽  
The Relationship

OBJECTIVEThe purpose of this study was to determine the rate of decompression for Chiari malformation type II in individuals with myelomeningocele in the National Spina Bifida Patient Registry (NSBPR). In addition, the authors explored the variation in rates of Chiari II decompression across NSBPR institutions, examined the relationship between Chiari II decompression and functional lesion level of the myelomeningocele, age, and need for tracheostomy, and they evaluated for temporal trends in rates of Chiari II decompression.METHODSThe authors queried the NSBPR to identify all individuals with myelomeningocele between 2009 and 2015. Among these patients, they identified individuals who had undergone at least 1 Chiari II decompression as well as those who had undergone tracheostomy. For each participating NSBPR institution, the authors calculated the proportion of patients enrolled at that site who underwent Chiari II decompression. Logistic regression was performed to analyze the relationship between Chiari II decompression, functional lesion level, age at decompression, and history of tracheostomy.RESULTSOf 4448 individuals with myelomeningocele identified from 26 institutions, 407 (9.15%) had undergone at least 1 Chiari II decompression. Fifty-one patients had undergone tracheostomy. Logistic regression demonstrated a statistically significant relationship between Chiari II decompression and functional lesion level of the myelomeningocele, with a more rostral lesion level associated with a higher likelihood of posterior fossa decompression. Similarly, children born before 2005 and those with history of tracheostomy had a significantly higher likelihood of Chiari II decompression. There was no association between functional lesion level and need for tracheostomy. However, among those children who underwent Chiari II decompression, the likelihood of also undergoing tracheostomy increased significantly with younger age at decompression.CONCLUSIONSThe rate of Chiari II decompression in patients with myelomeningocele in the NSBPR is consistent with that in previously published literature. There is a significant relationship between Chiari II decompression and functional lesion level of the myelomeningocele, which has not previously been reported. Younger children who undergo Chiari II decompression are more likely to have undergone tracheostomy. There appears to be a shift away from Chiari II decompression, as children born before 2005 were more likely to undergo Chiari II decompression than those born in 2005 or later.

scholarly journals Social Skills and Medical Responsibility Across Development in Youth With Spina Bifida

2020 ◽  
Author(s):  
Colleen Stiles-Shields ◽  
Kezia C Shirkey ◽  
Adrien M Winning ◽  
Zoe R Smith ◽  
Elicia Wartman ◽  
...  
Keyword(s):  
Social Skills ◽  
Spina Bifida ◽  
Social Variables ◽  
Prosocial Skills ◽  
Time Points ◽  
Medical Responsibility ◽  
Lesion Level ◽  
Predictive Role ◽  
Positive Social Skills

Abstract Objective  To examine the predictive role of social skills in youth with spina bifida (SB) on growth in medical responsibility across development. Methods  As part of a larger, longitudinal study, 140 youth with SB were assessed across four time points (ages 8–22 across time points). Mixed-effects models were investigated for change with: (a) no predictors (i.e., change in medical responsibility across age; time was examined using the participant’s age, centered at 11.5 years); (b) social variables (i.e., observed social behaviors, parent- and teacher-reported social skills) as predictors; and (c) social variables as predictors with intelligence quotient, lesion level, and sex as covariates. Results  Significant growth with age was identified for medical responsibility (p &lt; .0001). Observed, parent-reported, and teacher-reported social skills did not significantly predict this growth; however, all three predicted the intercept for medical responsibility at 11.5 years of age (ps ≤ .047). Parent-reported social skills remained a significant predictor of the intercept at 11.5 years of age when including the covariates (p = .008). Conclusions  Children with SB who exhibited more positive social skills were more likely to a have higher level of medical responsibility in late childhood, but higher levels of social skills were not associated with a more rapid increase in responsibility over time. Identifying existing social strengths and promoting the practice of prosocial skills may have additional benefits to children with SB, including their acquisition of medical responsibility.

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