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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 transition practice. The Transition Readiness Assessment Questionnaire (TRAQ) is a validated 20-question and 5-factor instrument with a 5-point Likert response set using a Stages of Change Framework. Objective: To improve the performance of the TRAQ and allow more precise measurement across the full range of transition readiness skills (from precontemplation to initiation to mastery). Design/Methods: On data from 506 previously completed TRAQs collected from several clinical practices we used MPlus v.7.4 to apply a graded response model (GRM), examining item discrimination and difficulty. New questions were written and added across all domains to increase the difficulty and discrimination of the overall scale. To evaluate the performance of new items and the resulting factor structure of the revised scale we fielded a new version of the TRAQ (with a total of 30 items) using an online anonymous survey of first year college students (in process). Results: We eliminated the five least discriminating TRAQ items with minimal impact to the conditional test information. After item elimination (k = 15) the factor structure of the instrument was maintained with good quality, ?2 (86) = 365.447, CFI = 0.977, RMSEA = 0.079, WRMR = 1.017. We also found that a majority of items could reliably discriminate only across lower levels of transition readiness (precontemplation to initiation) but could not discriminate at higher levels of transition readiness (action and mastery). Therefore we wrote 15 additional items intended to have higher difficulty. On the new 30 item TRAQ, confirmatory factor analysis, internal reliability and IRT results will be reported from a large sample of college students Conclusion(s): Using IRT and factor analyses we eliminated 5 of 20 TRAQ items that were poorly discriminating. We found that many of the items in the TRAQ could discriminate among those in the early stages of transition readiness, but could not discriminate among those in later stages of transition readiness. To have a more robust measure of transition readiness we added more difficult items and are evaluating the scale’s psychometric properties.

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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.

Title: Helping or Hovering: Examining Social Loafing and the Free-Rider Effect in Youth’s Transition Readiness Author: Mekyala Williams, East Tennessee State University Co-author(s): Kiana Johnson, MS, PhD Department of Pediatrics Quillen College of Medicine East Tennessee State University Lindsay Ellis Lee, PhD Department of Pediatrics Quillen College of Medicine East Tennessee State University Introduction Transition readiness in youth has been hard to study because parents and providers have served as managers rather than coaches hindering the process. Social loafing is a phenomenon that explains why people are more prone to exert less effort in group settings. We decided to observe the prevalence of social loafing in youth we examined if students knew how to perform specific transition readiness skills but allowed their support systems to do the task for them. This would be measured in opposition to them performing the tasks themselves since they do have the necessary skillset. The present study aims to validate the 4 domain subscales (i.e., managing medications, keeping appointments, tracking health issues, and talking with providers) found in the revised 20-item Transition Readiness Assessment Questionnaire (TRAQ). Additionally, the study will evaluate youth reliance on familial support systems for healthcare through the lens of the social loafing phenomenon. Methods To obtain demographic information, participants were asked on the survey to report their sex, age, ethnicity, and race (i.e., White, Black or African American, Asian, Native Hawaiian/Pacific Islander, Hispanic/Latino, American Indian, or Alaska Native, or other). Once all the surveys were completed, participants were categorized into white and non-white. We surveyed 161 youth from two different schools in South Central Appalachia about their transition readiness using anchors from the TRAQ with revised response categories. The response categories were whether they know how to do the specific task or not and whether youth perform the task themselves or if someone else does the task for them. Using confirmatory factor analysis, the revised 20-item version of the TRAQ will validate with the present sample. All statistical analyses will be conducted in R. Anticipatory Results and Conclusions Preliminary results based on the 161 participants found that youth can perform these tasks but very frequently allow someone else to do them. Out of the 20 items listed on the TRAQ, the endorsement rate of social loafing response varied between 10% and 52%. Fifteen out of the 20 items had a 30% response rate for social loafing. For the transition to adulthood to be successful for youth, they have to learn to accept different roles and responsibilities without the help of anyone else. This emphasizes the importance of shifting parents and providers to a coaching role rather than a managing role. Doing so will help enhance the youths’ ability and independence as they get older. This can also be applied to healthcare settings as using a coaching approach will minimize social loafing and allow more competence in managing their health.

PURPOSE: In order to transition to adulthood and independence, youth with spina bifida must assume significant self-management responsibilities including monitoring for shunt malfunction, maintaining intact skin in areas that are insensate, and maintaining proper bowel and bladder function. Validated measures of specific spina bifida self-management skills are lacking and this hampers the ability of clinical personnel to support successful transition for youth with spina bifida. METHODS: We developed a self-report measure specific to SB self-management skills consistent with the framework of the Transition Readiness Assessment Questionnaire (TRAQ). To test the predictive validity of the tool we surveyed 90 youth and young adults ages 12-25 with spina bifida attending a multidisciplinary clinic participating in the National Spina Bifida Patient Registry (NSBPR). RESULTS: Adjusted for age, gender, race, insurance status and lesion level, higher scores on the TRAQ-SB (increased self-management) were negatively associated with urinary incontinence in the past month. Only lesion level, and not TRAQ-SB scores, was a significant predictor of stool incontinence and skin breakdown. CONCLUSIONS: Higher TRAQ-SB scores are negatively associated with bladder incontinence in youth with spina bifida. While stool continence and skin breakdown were not associated with TRAQ-SB scores, this relation is complex and may be obfuscated by either reporting bias or outcome measurement bias. To further refine the questionnaire and understand this relationship we need to field it prospectively in the SB network with larger samples. The TRAQ-SB questionnaire, however, does have value in the clinical setting to help promote the acquisition of specific self-management skills among youth with spina bifida.