Browsing by Subject "spina bifida"

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    Radiographic abnormalities, bladder interventions, and bladder surgery in the first decade of life in children with spina bifida
    (Springer, 2019-07) Rensing, Adam J.; Szymanski, Konrad M.; Misseri, Rosalia; Roth, Joshua D.; King, Shelly; Chan, Katherine; Whittam, Benjamin M.; Kaefer, Martin; Rink, Richard C.; Cain, Mark P.; Urology, School of Medicine
    Background Spina bifida (SB) patients are at increased risk for hydronephrosis, bladder storage and emptying problems, and renal failure that may require multiple bladder surgeries. Methods We retrospectively reviewed patients born with SB 2005–2009, presenting to our institution within 1 year of birth. Outcomes at 8–11 years old included final renal/bladder ultrasound (RBUS) results, clean intermittent catheterization (CIC) use, anticholinergic use, surgical interventions, and final renal function. We excluded those without follow-up past age 8 and/or no RBUS or fluoroscopic urodynamic images (FUI) within the first year of life. Imaging was independently reviewed by four pediatric urologists blinded to radiologists’ interpretation and initial findings compared with final outcomes. Results Of 98 children, 62 met inclusion criteria (48% male, 76% shunted). Median age at last follow-up was 9.6 years. Upon initial imaging, 74% had hydronephrosis (≥ SFU grade 1), decreasing to 5% at 10 years (p < 0.0001). Initially, 9% had ≥ SFU grade 3 hydronephrosis, decreasing to 2% (p = 0.13). CIC and anticholinergic use increased from 61% and 37% to 87% and 86%, respectively (p = 0.001 and p < 0.0001, respectively). With follow-up, 55% had surgical intervention and 23% had an augmentation. Of children with a serum creatinine/cystatin-C at 8–11 years old, one had confirmed chronic kidney disease (stage 2). Conclusions Despite initial high incidence of hydronephrosis, this was low grade and resolved in the first decade of life. Additionally, the 8–11-year incidence of kidney disease and upper tract changes was low due to aggressive medical management.
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    Transitioning Young Adults with Neurogenic Bladder – Are We Asking Too Much?
    (Elsevier, 2019) Roth, Joshua D.; Szymanski, Konrad M.; Ferguson, Ethan J.; Cain, Mark P.; Misseri, Rosalia; Pediatrics, School of Medicine
    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.