As children mature into adulthood they must attain a number of critical skills in order to lead an independent lifestyle with sufficient quality of life The attainment of these skills may become compromised due to disability, which is especially true for children with Spina Bifida, a defect in the closure of the spine during development. The consequences of not attaining such skills can impact health, social interaction, and quality of lif and have serious financial impact. The Colorado Spina Bifida Patient Registry (CSBPR) program has developed and tested the means to evaluate the attainment of self-care skills (e.g. bathing, dressing, eating, managing bowel and bladder, etc.) in children with Spina Bifida as they mature. The goal of this study is to understand how the pediatric Spina Bifida population as a whole attains self-care skills as they grow towards maturity by developing a population based self-care growth curve. In this way we can understand how development of self-care skill compares to children without disability and can serve as a means to identify children that are falling behind in the acquisition of essential skills. The advantage therefore is that intervention can be planned and implemented to assist in their development. The analogy for this approach is the use of population standard growth curves by pediatricians. This project will be piloted in collaboration with two other sites within the National Spina Bifida Patient Registry consortium (NSBPR) and then expanded to include the entire registry group. Among the most critical of skills from a health as well as social perspective is the ability to maintain bowel and bladder continence. Our program will evaluate numerous patient centric health care characteristics to identify which have a significant impact on the attainment of bowel and bladder continence in the pediatric Spina Bifida population across all 17 sites of the national registry consortium. We will then build a group model of the most significant elements that affect continence. By understanding which characteristics have a major impact on continence new standards of care can be developed to address these specific elements. Standard of care guidelines can then be developed those that provide health care for individuals with Spina Bifida.
Children with Spina Bifida often have difficulties doing many of the things we take for granted in terms of being able to take care of ourselves such as bathing, dressing and even going to the bathroom. This makes it difficult for them to live independent lives even as an adult. Our study will develop the means to clearly identify those children that are not achieving independence in self-care skills as they mature so that doctors and parents my work to correct those deficits and promote independence and improve quality of life.
| Liu, Tiebin; Ouyang, Lijing; Thibadeau, Judy et al. (2018) Longitudinal Study of Bladder Continence in Patients with Spina Bifida in the National Spina Bifida Patient Registry. J Urol 199:837-843 |
