Transitioning Young Adults with Neurogenic Bladder – Are We Asking Too Much?

Abstract

Introduction Significant numbers of young adults with chronic health conditions fail to transition. Objective We aimed to evaluate how ready urologic patients who have transitioned were actually prepared for that process. Due to the cognitive impairments frequently seen with spina bifida (SB), we hypothesize that these individuals will be less prepared to transition medical care to adult providers compared to their healthy counterparts. Methods Participants included consecutive patients in the transitional SB clinic at our institution and controls (college student without obvious physical disability or interest in healthcare related fields aged 18-25). Both groups were administered the Transition Readiness Assessment Questionnaire (TRAQ) over a nine-month period. Five TRAQ domains assess 20 skills necessary to transition. Likert scale responses range from 1 “No, I do not know how” to 5 “Yes, I always do this when I need to” (which we considered appropriate for transitioned patients). Demographics and the number of daily medications taken were collected. Patients and healthy controls were compared using 1) total and domain TRAQ scores, 2) the proportion of non-transitioned skills (“1”) and 3) fully transitioned skills (“5”). Non-parametric statistics were used. Results 43 unique SB patients (30.8% shunted, 46.5% female) and 100 controls were enrolled. SB patients were older than controls (21 vs 20 years, p<0.001). There was no gender difference between groups (p=0.33). Transitioned patients and college students were fully transitioned only in the “Talking with Providers” domain ( Figure ). College students performed significantly better than patients in the domains of “Appointment Keeping” (p=0.04) and “Tracking Health Issues” (p=0.02). Transitioned patients were less likely to be interested in learning how to perform skills in the domains of “Appointment Keeping” and “Tracking Health Issues” (p<0.001 for both domains). Discussion We describe the transition readiness of young adults with SB compared to healthy controls and other youths with chronic health conditions. Limitations include the small sample size, potentially limiting generalizability, as well as cross-sectional nature. Conclusion “Transitioned” patients with SB had lower TRAQ scores in some domains compared to healthy college students, who themselves had scores indicating that they were not fully ready for transition. Increased attention to transition readiness in people with SB is necessary, as even healthy young adults struggle with these tasks and are poorly prepared for transition.