“Given the improved longevity of individuals with SB [spina bifida], transitional care issues (such as health-related independence) are becoming progressively more vital.”
Castillo et al. J Pediatr Rehabil Med. 2017;10(3-4):219-226.
Spina bifida is a birth defect of the spinal cord that often results in bladder and bowel dysfunction. Thanks to many medical advances, many more people grow older with the condition. Many adults live with spina bifida-related conditions and strive for full participation in society. One of the main barriers to full participation is related to incontinence. Incontinence has a strong association with health-related quality of life for people with spina bifida.
In the US approximately 30 new cases of spina bifida per 100,000 births occur. Recent research demonstrates that many of these children (who later on become adults) have trouble with incontinence. For example, in a sample of more than 3200 spina bifida patients, only 41% of participants were found to be bladder continent and 43% bowel continent. Bowel continence in adults also appears to be associated with aspects of social status, such as employment status, possession of private insurance, and level of education.
In general, it seems important to encourage self-care early on in children with spina bifida. This helps to ensure self-management and facilitate the transition to adulthood. Self-managed intermittent catheterization is a gold standard therapy for managing the bladder. It improves health-related quality of life, reduces the risk of urinary tract infections, and preserves kidney function. A new study has, for example, found that intermittent catheterization prevents scar formation on the kidneys.
Support from parents and healthcare providers is important for promoting early independence in children with spina bifida. Some new research presents useful educational initiatives to promote this but more studies are generally warranted.
Summary of Publications
Variation in bowel and bladder continence across US spina bifida programs: A descriptive study.
https://www.ncbi.nlm.nih.gov/pubmed/29125511
Author and Origin
Freeman KA, Castillo H, Castillo J, Liu T, Schechter M, Wiener JS, Thibadeau J, Ward E, Brei T.
US
Summary
Observational retrospective study of bladder and bowel continence in 3252 individuals with spina bifida in the US.
Conclusions
Bladder and bowel continence differed by spina bifida type, with lower prevalence for those with myelomeningocele. In total, only 41% of participants were bladder continent and 43% bowel continent.
Comments
Epidemiological data on bladder and bowel continence in spina bifida patients in the US.
Bowel management and continence in adults with spina bifida: Results from the National Spina Bifida Patient Registry 2009-15.
https://www.ncbi.nlm.nih.gov/pubmed/29125526
Author and Origin
Wiener JS, Suson KD, Castillo J, Routh JC, Tanaka S, Liu T, Ward E, Thibadeau J, Joseph D, Registry NSBP.
US
Summary
Registry study of 5209 patients with spina bifida (SB) comparing bowel management and continence in adults and children.
Conclusions
Adults were more likely to use digital stimulation or disimpaction, or to have undergone a colostomy than children. Bowel continence in adults was significantly associated with employment, possession of private insurance, a non-myelomeningocele type of SB, and level of education.
Comments
Registry study of patients with SB, investigating bowel management and continence.
Variation in surgical management of neurogenic bowel among centers participating in National Spina Bifida Patient Registry.
https://www.ncbi.nlm.nih.gov/pubmed/29125521
Author and Origin
Routh JC, Joseph DB, Liu T, Schechter MS, Thibadeau JK, Chad Wallis M, Ward EA, Wiener JS.
US
Summary
Registry study of 5528 patients with spina bifida investigating specific factors associated with patients who underwent surgical interventions for neurogenic bowel.
Conclusions
Surgical procedures were more likely in patients who were older, white, female, nonambulatory,
had higher-level lesions, had myelomeningocele lesions, and had private health insurance.
Comments
Registry study of patients with spina bifida, investigating factors associated with surgical procedures for neurogenic bowel.
Urologic self-management through intermittent self-catheterization among individuals with spina bifida: A journey to self-efficacy and autonomy.
https://www.ncbi.nlm.nih.gov/pubmed/29125508
Author and Origin
Castillo J, Ostermaier KK, Fremion E, Collier T, Zhu H, Huang GO, Tu D, Castillo H.
US
Summary
Observational prospective study of catheter use in 200 children with spina bifida.
Conclusions
Antimicrobial resistance rates are increasing and the increase is higher for patients who require intermittent catheterization than in those who do not. Careful monitoring is recommended.
Comments
Epidemiological data on intermittent catheter use in spina bifida patients in the US.
Open access.
See more details in the Publication Highlight.
Expectant use of CIC in newborns with spinal dysraphism: Report of clinical outcomes.
https://www.ncbi.nlm.nih.gov/pubmed/29125524
Author and Origin
Timberlake MD, Kern AJ, Adams R, Walker C, Schlomer BJ, Jacobs MA.
US
Summary
Observational retrospective review of intermittent catheter use in 102 children with spinal dysraphism.
Conclusions
Early initiation to and being on intermittent catheterization (due to hydronephrosis, reflux,
elevated filling pressures, or febrile urinary tract infection) was associated with lower chance of renal abnormalities.
Comments
Study proposing that intermittent catheterization can have a preventive effect on renal scarring in children with spinal dysraphism.
Construction and validation of educational video for the guidance of parents of children
regarding clean intermittent catheterization.
https://www.ncbi.nlm.nih.gov/pubmed/29267731
Author and Origin
Lima MB, Rebouças CBA, Castro RCMB, Cipriano MAB, Cardoso MVLML, Almeida PC.
Brasil
Summary
Validation of an educational video for parents of children who require intermittent catheterization.
Conclusions
The 12 minute video was found to be valid regarding appearance and content, and useful in hospital and outpatient settings.
Comments
Study evaluating an educational video describing intermittent catheterization of children.
Open access.
This blog post is an extract of the Science Alert from January 2018 (76040-USX-1801)
