Assessment of bladder and kidney functioning in adult spina bifida patients by Dutch urologists: A survey

Aims To investigate how urologists generally perform the follow‐up of adult spina bifida (SB) patients and to see to which extent recommendations from guidelines on neurogenic lower urinary tract dysfunction are followed. Methods A self‐designed electronic multiple choice questionnaire was sent to all 365 urologists in the Netherlands. Results Overall 100 urologists (27.4%) responded, of which 96 (26.3%) responses were usable. Of 95 urologists, 18 (18.9%) saw no adult SB patients, 47 (49.5%) saw 1–5 patients/year, 15 (15.8%) saw 6–10, and 15 urologists (15.8%) saw >10 adult SB patients/year. Of 96 urologists, a specialized clinic for adult SB patients was present in only 11 (11.5%) cases. Ultrasonography was performed regularly (at least once every 1–5 years) by 68/74 (91.9%) urologists. Glomerular filtration rate (GFR) was determined at least every 5 years by 66/74 (89.1%) urologists. For determination of GFR, serum creatinine was most often used (94.5%). Renography and video‐urodynamic investigations (UDS) were performed on a regular basis by 8.1% and 24.3%, respectively. Conclusions In adult SB patients, the responding Dutch urologists regularly evaluate bladder and kidney function using GFR and ultrasonography, although less frequently than recommended by the guidelines. UDS is performed on indication only, which is not in accordance with the guidelines. Regular UDS might be valuable to detect risk factors for insidious renal damage. The role of renography, as well as the desirability of multidisciplinary teams, has yet to be determined. Neurourol. Urodynam. 33:289–295, 2014. © 2013 Wiley Periodicals, Inc.