How successful is the transition to adult urology care in spina bifida? A single center 7-year experience.

INTRODUCTION

Rates of successful transition from adolescent to adult spina bifida (SB) care are unknown.

OBJECTIVE

We aimed to assess rates and predictors of successful transition from a multidisciplinary SB clinic to a transitional urology clinic (TUC), or a pediatric or adult urologist.

STUDY DESIGN

We retrospectively reviewed patients discharged from a multidisciplinary SB clinic (2006-2012), collecting demographic and clinical data. At transition, all patients/families were given instructions to arrange an appointment within 12 months. Patients who followed-up within 2 years were classified as transitioned. Logistic regression was used for analysis.

RESULTS

Of 77 patients discharged at a mean age of 19.1 years, 31 (40.3%) successfully transitioned (mean follow-up 4.7 years). Only 20/41 (48.8%) with prior bladder augmentation, urinary channel, and MACE transitioned. There was no significant change in patients transitioning over time or late catch-up presentations (p = 0.41 see Figure). Transitioned and non-transitioned groups were similar in age, gender, home-to-clinic distance, insurance, ambulation, shunt status, prior non-adherence, emergency room visits, neurosurgery appointments, hospitalizations, and surgeries (including genitourinary reconstruction) before discharge (p = 0.22). Transitioned patients had more pre-discharge appointments with services outside the SB clinic (p = 0.01) and radiographic studies (p < 0.001), but these were not significant on multivariate analysis (p = 0.16). Among those who did not transition, five (6.5%) presented after 2 years, rarely with new complaints (20.0%). Patients without urological follow-up were most likely to visit the emergency room (p = 0.03).

DISCUSSION

To facilitate continued care and a smooth transition, the TUC was opened across the corridor from the multidisciplinary SB clinic. To our surprise, a low percentage of patients actually transitioned to adult care over the last 7 years. It is a sobering fact that despite offering three different transition models, <50% of patients took advantage of any of them. While none of the predictors we anticipated to be important in a successful transition were statistically significant, potentially because of low statistical power, perhaps others, such as insufficient time to coordinate care, wait times, and lack of adult coordinated care programs, may be more important. We were unable to compare the urologic health of those who did and did not transition, as we relied on medical record data.

CONCLUSIONS

Only 40% of patients transitioned successfully from a multidisciplinary SB clinic and few presented after 2 years. Patients who transitioned tended to have more active health issues and more radiographic tests prior to discharge. Those followed by a urologist are less likely to use emergency room services.