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Transition Readiness and Self-Management in Spina Bifida- Comparing Pediatric and Adult Clinic Populations Using the TRAQ-SB
Betsy Hopson, PhD, MSHA, Timothy Boswell, MD, Carmen Tong, DO, David Joseph, MD, Stacy Tanaka, MD.
University of Alabama at Birmingham, Birmingham, AL, USA.
Background:Transition readiness is a critical component of spina bifida (SB) care, yet few studies evaluate changes in readiness and self-management over time. The Transition Readiness Assessment Questionnaire-Spina Bifida (TRAQ-SB) is a validated, disease-specific instrument. Our SB care model, with dedicated pediatric and adult clinics, integrates an Individualized Transition Plan (ITP), a structured goal-setting framework initiated at age 14. Although national transition guidelines exist, implementation varies, and outcome data demonstrating the effect of structured programs are limited. The purpose of this project is to use our >10 years of experience with a structured transition program to assess whether our approach improves readiness and self-management skills, and to compare TRAQ-SB scores between pediatric and adult cohorts.
Methods:TRAQ-SB data were collected from patients in the pediatric transition readiness clinic and from adults who completed transition and are followed in the adult SB clinic. The TRAQ-SB evaluates five general domains, managing medications, appointment keeping, tracking health issues, talking with providers, and Spina Bifida-Specific Transition Activities, which include recognition and management of shunt symptoms, bowel, bladder, skin, and equipment-related issues. Each item was scored on a 5-point Likert scale, where 1 = “No, I do not know how,” 2 = “No, but I want to learn,” 3 = “No, but I am learning to do this,” 4 = “Yes, I have started doing this,” and 5 = “Yes, I always do this when I need to.” Mean scores (1-5 scale) and the proportion achieving independence (≥4) were compared between pediatric and adult cohorts.
Results:A total of 64 pediatric (mean age 16.6 ± 2.1 years, 50.6% female) and 101 adult (mean age 32.4 ± 10.2 years, 39% female) participants completed the TRAQ-SB. Adults demonstrated higher readiness across all domains of the TRAQ-SB, including managing medications (4.38 vs. 4.10), appointment keeping (4.22 vs. 3.82), tracking health issues (4.29 vs. 3.91), and talking with providers (4.46 vs. 4.12). Within the Spina Bifida-Specific Transition Activities domain, the greatest improvements were observed in bowel management (4.45 vs. 3.85), recognition of shunt malfunction (4.15 vs. 3.51), and equipment management (4.28 vs. 3.25). The three bladder-related items, practicing bladder management, recognizing symptoms of urinary tract infection, and addressing bladder problems, were among the highest-scoring questions for both cohorts (pediatric means 4.45, 4.28, and 4.31; adult means 4.40, 4.60, and 4.58), reflecting strong early emphasis on bladder care and sustained independence after transition. Adults were more likely to report independence (scores ≥4) across all items, reflecting growth in both general and condition-specific self-management skills fostered by the ITP framework.
Conclusions:The TRAQ-SB effectively differentiates readiness between pediatric and adult SB clinic populations and demonstrates improvement across all domains of transition readiness. While increasing age and experience naturally contribute to greater self-management, the largest gains in bowel management,
shunt recognition, and equipment management likely reflect the impact of targeted ITP interventions emphasizing daily self-care and problem-solving. Longitudinal integration of structured goal-setting and individualized transition planning beginning in adolescence enhances real-world readiness for adult care and provides a reproducible model for lifespan SB programs.
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