Purpose Achieving bladder continence in individuals with spina bifida is a lifetime management goal. We investigated bladder continence status through time and factors associated with this status in patients with spina bifida. Materials and Methods We used National Spina Bifida Patient Registry data collected from 2009 through 2015 and applied generalized estimating equation models to analyze factors associated with bladder continence status. Results This analysis included 5,250 participants with spina bifida in a large, multi-institutional patient registry who accounted for 12,740 annual clinic visit records during the study period. At last followup mean age was 16.6 years, 22.4% of participants had undergone bladder continence surgery, 92.6% used some form of bladder management and 45.8% reported bladder continence. In a multivariable regression model the likelihood of bladder continence was significantly greater in those who were older, were female, were nonHispanic white, had a nonmyelomeningocele diagnosis, had a lower level of lesion, had a higher mobility level and had private insurance. Continence surgery history and current management were also associated with continence independent of all other factors (adjusted OR and 95% CI 1.9, 1.7–2.1 and 3.8, 3.2–4.6, respectively). The association between bladder management and continence was stronger for those with a myelomeningocele diagnosis (adjusted OR 4.6) than with non-myelomeningocele (adjusted OR 2.8). Conclusions In addition to demographic, social and clinical factors, surgical intervention and bladder management are significantly and independently associated with bladder continence status in individuals with spina bifida. The association between bladder management and continence is stronger in those with myelomeningocele.
AIM To evaluate quantitatively fat distribution in children and adolescents with myelomeningocele using dual-energy X-ray absorptiometry (DXA). METHOD Cross-sectional DXA measurements of the percentage of fat in the trunk, arms, legs, and whole body were compared between 82 children with myelomeningocele (45 males, 37 females; mean age 9y 8mo, SD 2y 7mo; 22 sacral, 13 low lumbar, 47 mid lumbar and above) and 119 comparison children (65 males, 54 females; mean age 10y 4mo, SD 2y 4mo). Differences in fat distribution between groups were evaluated using univariate and multivariate analyses. RESULTS Children with myelomeningocele had higher total body fat (34% vs 31%, p=0.02) and leg fat (42% vs 35%, p<0.001than comparison children, but no differences in trunk or arm fat after adjustment for anthropometric measures. INTERPRETATION Children with myelomeningocele have higher than normal total body and leg fat, but only children with higher level lesions have increased trunk fat, which may be caused by greater obesity in this group. Quantifying segmental fat distribution may aid in better assessment of excess weight and, potentially, the associated health risks.
Children with myelomeningocele have abnormal biochemical markers for cardiovascular disease, insulin resistance and bone and mineral metabolism. Early recognition and monitoring of these risk factors in patients with myelomeningocele may help prevent later complications.
This article provides an overview of an innovative nurse-led interdisciplinary health care transition (HCT) model of care entitled Movin' On Up for adolescents and emerging adults (AEAs) with spina bifida (SB) that was originally implemented in 2011. The components of the HCT service model include an HCT nursing specialist, who is an advanced practice nurse; interdisciplinary health care transition plans based on the individualized needs of AEAs; an interdisciplinary HCT team that meets on a weekly basis; direct HCT services provided in the weekly SB clinic; and telephonic follow-up with AEAs, families, and providers. The characteristics of this nurse-led HCT program can be described as an integrated, interdisciplinary, and comprehensive model of care based on a life span approach. To date, a total of 210 AEAs with SB, ages 10 to 20 years, have been enrolled into the program. An important feature of this HCT service model is that it is self-supporting; it generates the revenue needed for sustainability and, unlike other HCT programs, is not reliant on extramural programmatic support. Other accomplishments of Movin' On Up include the development of a transfer protocol wherein 35 AEAs with SB have been supported in their transfer to adult care; implementation of a standardized process to ensure that service referrals to community-based services for postsecondary education, employment, training, and initiation of conservatorships are made; timely performance of evaluations; close tracking of needs and outcomes of self-management knowledge and skills instruction; and attention to equipment needs prior to transfer.
Pathologic fractures of the femur and tibia are common in youth with spina bifida (SB). These fractures may be associated with deficient bone accrual due to decreased ambulation and skeletal loading. This prospective cohort study used quantitative computed tomography (QCT) to assess three‐dimensional (3D) bone properties in children and adolescents with SB. Eighty‐three ambulatory youth with SB underwent QCT imaging of the tibia at up to four annual visits between ages 6 to 16 years (294 total visits averaging 3.5 visits/patient). A total of 177 controls without disability and 10 non‐ambulatory youth with SB underwent imaging once. Bone geometric properties (cortical bone area, cross‐sectional area, cortical thickness, cortical density, and moments of inertia) were measured at the mid‐diaphysis (50% of bone length); cross‐sectional area, cancellous density, and density‐weighted area were measured in the proximal (13% of bone length) and distal (90% of bone length) metaphyses. Bone properties were compared between the ambulatory SB and control participants, among SB neurosegmental subgroups (sacral, low lumbar, mid lumbar and above) as a function of pubertal stage (prepubertal, pubertal, postpubertal), and considering SB type (myelomeningocele, lipomyelomeningocele) using linear mixed effects models adjusted for sex, age, height percentile, and body mass index (BMI) percentile. Only cancellous density of both metaphyses and weighted area of the proximal metaphysis differed between ambulatory children with SB and controls before puberty. However, significant deficits in all bone properties manifested during and after puberty as moderate bone growth in the SB group failed to keep pace with the large increases normally observed during puberty. The bone deficits primarily affected patients with myelomeningocele, and similar deficits were observed at all neurosegmental levels except that cancellous density was closer to normal in the sacral group. Descriptive analysis of the 10 non‐ambulatory youth with SB showed greater bone deficits than ambulatory children, particularly for cancellous density in the distal metaphysis. © 2020 The Authors. JBMR Plus published by Wiley Periodicals LLC on behalf of American Society for Bone and Mineral Research.
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