Background: Measuring the acquisition of self-management skills are part of evidence based health care transition practice. Youth with Spina Bifida have significant demands for self-management and high self-care burden. We developed an 11 item Spina-Bifida -TRAQ to assess self-management skills specific for Spina Bifida including urine, stool continence management, and skin and shunt maintenance. A detailed description of the SB-TRAQ, its reliability and criterion validity are presented elsewhere. Objective: To examine the predictive validity of the Spina Bifida-TRAQ among youth with Spina Bifida. Design/Methods: Participants include 90 youth with Spina Bifida who attend a clinic participating in the National Spina Bifida Patient Registry (NSBPR) (see Table1 for demographics). Youth completed the newly developed 11-item SB-TRAQ. De-identified NSBPR data from the electronic medical record (EMR) was linked with participants’ responses from the SBTRAQ. Two separate regressions were conducted using: age, sex, race, ethnicity, insurance, lesion level, lifetime # of shunt revisions, and SB-TRAQ to predict urinary incontinence (UI) episodes/month, and stool incontinence (SI) episodes/month. Results: Two separate multiple linear regressions were calculated to predict frequency (times per month) of UI and SI based on age, sex, race, ethnicity, insurance, having an IEP, spinal cord lesion level, lifetime number of shunt revisions, and SB-TRAQ. For UI, a significant regression equation was found (F(9,77) = 2.44, p<.001), with an R2 of .22. SB-TRAQ and IEP were significant predictors of UI; youths’ UI decreased 1.15 days/month for each point increase in SB-TRAQ; youth with an IEP had .83 more episodes of UI/month than did youth without an IEP. The model for SI had a significant regression equation (F(9,75) = 3.18, p<.001), with an R2 of .28. SB-TRAQ and lesion level were significant predictors of SI; youths SI decreased .58 days for each point increase in SB-TRAQ; each lower lesion levels (.13/level) had fewer SI episodes/month than did those with higher lesion levels. Conclusion(s):

Background: Measuring the acquisition of self-management and health care utilization skills are part of evidence based health care transition practice. Youth with Spina Bifida (SB) have significant demands for self-management and high self-care burden. To complement HCT skills assessed in the TRAQ, we developed an 11 item SB-TRAQ to assess self-management skills specific to Spina Bifida. Similar to the TRAQ, the SB-TRAQ uses a 5-point Likert responses using Stages of Change. Objective: To develop and assess the reliability and validity of a questionnaire to measure independence and skill acquisition for youth with SB. Design/Methods: Working with a multidisciplinary team of experts in the care of youth with SB we developed a twelve item questionnaire specific to the main facets of SB self-care and -management including urine and stool continence, prevention of skin breakdown and awareness of signs of shunt malfunction. The items were reviewed and revised through several iterations by healthcare providers and patients. The SB-TRAQ was fielded in an SB Specialty Clinic participating in the National Spina Bifida Patient Registry (NSBPR). Ninety youth with SB completed the 20-item TRAQ and the 12-item SB-TRAQ. Item response means, and distributions were assessed. A principal component analysis (PCA) was conducted with oblique rotation (promax). We also assessed criterion validity by examining the correlation of the SB-TRAQ supplement with the TRAQ and age. Results: Sample characteristics and scale information for the TRAQ and SB-TRAQ supplements are displayed in Table 1, including a Cronbach alpha of 0.9 for the SB-TRAQ. The item characteristics are provided in Table 2. Results of the factor analysis show eleven items loaded onto one factor, with almost all items loadings > 0.7 . One item did not load, resulting in an 11 item solution. The primary factor explained 62% of the variance. Intraclass correlations of the SB-TRAQ supplement with the TRAQ overall scale and subscales demonstrated good criterion validity (TRAQ overall ICC = .74; ICCs varied among the subscales and the SB-TRAQ). Additionally, the SB-TRAQ, as hypothesized, was significantly and positively correlated with age (Pearson correlation .29, p<.01). Conclusion(s): Results of our analyses demonstrate that the SB-TRAQ had good internal reliability and excellent criterion validity as demonstrated by strong correlation with age and the validated TRAQ. The SB-TRAQ can be a useful tool to help youth with SB achieve independence and self-management.