Pediatric urology patient transition to adulthood: Brief report on the barriers and shortcomings in a resource poor state

Abstract

Introduction and Objectives

To evaluate the readiness of pediatric spina bifida (SB) patients to transition from pediatric to adult urologic care. Since 1975 the survival rate of SB has increased from less than 50 % to 85 %. Adult SB patients have increased urologic needs due to their increased risk of complications including: 7–11 times risk of renal failure, 2 times risk of bladder cancer, and 46 times risk likely of UTIs. These SB complications resulted in 37,000 hospitalization from 2004–2005 with one third of those being deemed preventable. Research has shown that adult SB patients who have successfully transitioned to adult care utilize less care 5.33 annual ambulatory visits compared to 7.25 in the non-transitioned counterparts. Our goal is to evaluate barriers, concerns, and comfort in skills deemed necessary for an SB patient’s successful transition to adult care in a resource poor state.

Material and Methods

All SB patients between the ages of 12–18 who participate in the multidisciplinary clinic and are seen by urology at UNM were eligible and offered to complete a questionnaire prior to their clinic visit. The questionnaire addressed awareness, fears and desire to learn about transitioning.

Results

Of the SB patients that were eligible for the study 10 have filled out the survey. The average age is 17.7. While 70 % know the meaning of transition, only 40 % have thought about the process. 70 % of patients believe the best age to transition is 19–21. The most prominent fears about transition included leaving current urologist (60 %), increasing responsibility for their own care (50 %), and the new urologist not knowing their past medical history (50 %) (Fig 1). Questions evaluating preferred method transition education 60 % preferred talking with the pediatric urologist, and marked they would like to meet with the pediatric urologist and adult urologist simultaneously.