Integument: Guidelines for the care of people with spina bifida.

PURPOSE: Skin-related issues have a significant impact on health, activities of daily living, and quality of life among people with spina bifida. Data presented by select clinics that participate in the National Spina Bifida Patient Registry reported that 26% of individuals had a history of pressure injuries with 19% having had one in the past year. The spina bifida community lack direct guidelines on prevention of these and other skin related issues. The Integument (skin) Guidelines focus on prevention, not treatment, of existing problems. METHODS: Using a consensus building methodology, the guidelines were written by experts in spina bifida and wound care. RESULTS: The guidelines include age-grouped, evidence-based guidelines written in the context of an understanding of the whole person. They are presented in table format according to the age of the person with spina bifida. CONCLUSION: These guidelines present a standardized approach to prevention of skin-related issues in spina bifida. Discovering what results in successful minimization of skin-related issues with testing of technology or prevention strategies is the next step in protecting this vulnerable population.

Using a Decision Tree to Guide Bowel Management in Spina Bifida.

BACKGROUND: When born with spina bifida, there are numerous neurologic disorders that accompany this birth defect, including neurogenic bowel. Proactive, systematic, and rational approaches can lead to continence and a more functional lifestyle [1]. METHODS: Based on the evidence in the literature and expert experience, our approach to bowel management was developed as a step by step, individualized approach. This was converted to a decision tree for easy guidance of treatment decisions. The approach includes teaching patients and families normal bowel function, changes resulting from neurogenic bowel, common pitfalls in bowel management, and techniques that may improve outcomes. The decision tree, starting with dietary management, breaks into a two-fold attack, oral and rectal. Our data as part of the National Spina Bifida Patient Registry (NSBPR) database was compared to public data from the NSBPR. RESULTS: Preliminary data from the NSBPR in 2011 reported bowel continence in 42.1% (n = 898) compared to our clinical outcomes of 72.1% (n = 43). As the variable of bowel continence was further defined and more patients were enrolled, the clinic results were comparable to the national reports. CONCLUSION: Consistency among providers and caregivers is critical to evaluating the management of continence in spina bifida. While this protocol warrants further evaluation, it is offered as an evidence-based, step by step, approach to bowel management in spina bifida with good outcomes for patient management.

Functional assessment following intrathecal baclofen therapy in children with spastic cerebral palsy.

The purpose of this article is to describe outcomes of intrathecal baclofen therapy for 29 patients with cerebral palsy, focusing on impairments, functional limitations, and disability. Patients received individualized rehabilitation and were followed up to 24 months. The primary outcome measures were the Ashworth Scale and the functional skills and caregiver assistance scales of the Pediatric Evaluation of Disability Inventory (PEDI). Ashworth Scale scores were significantly reduced (P < or = .0005). All areas of functional skills and caregiver assistance improved. Comparing groups of adults and patients less than 18 years, there were no significant differences, but there was a relationship between age and dose. Comparing groups of patients in high and low levels of independent functional mobility, no significant differences were found. These results provide suggestive evidence that the combination of intrathecal baclofen therapy and rehabilitation has positive effects across the dimensions of disablement. This study serves as a basis for high-level scientific studies of these effects.