Society For Pediatric Urology

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An International Survey of Classic Bladder Exstrophy Management
Ezekiel E. Young, MD1, Christopher A. Hesh, MD2, Paul D. Sponseller, MD2, Heather N. Di Carlo, MD2, John P. Gearhart, MD2.
1Stony Brook University School of Medicine, Stony Brook, NY, USA, 2The Johns Hopkins University School of Medicine, Baltimore, MD, USA.

Introduction
While evaluation and management options for classic bladder exstrophy patients are numerous and varied, relatively little is known regarding the relative utilization of different methods, either within any one country, or on an international scale. This project surveyed a large group of exstrophy surgeons throughout the world, seeking to document the methods they currently employ.
Materials & Methods
Using a combination of professional email lists, personal contacts and referral networking, a list of e-mail addresses of international surgeons who care for exstrophy patients was compiled. An online survey was sent out to each e-mail address on this list. Trainees and surgeons who had not performed classic bladder exstrophy closure within the previous 5 years were excluded from participation. Survey questions addressed the respondents' surgical practice and years since training, as well as their preferred methods of preoperative evaluation, operative management, and postoperative management. Survey invitations were sent out starting in December 2014 and responses were collected and data compiled for approximately 3 months.
Results
1,152 valid e-mail addresses were invited resulting in 293 respondents representing 39 countries and every AUA section, a 25.43% response rate. 76 respondents were excluded due to current trainee status or lack of experience closing a CBE patient in the last 5 years, leaving 217 respondents. Respondents reported a median of 17 years since finishing their surgical training (IQR 8-25 years). The practice makeup of the respondents included pediatric urology (n = 209), general urology (n = 9), general pediatric surgery (n = 59), and other practice makeup (n = 3). The results of each question are reported in the following table:

Phase of CareMODALITY% of Surgeons Reporting Current Utilization
Preoperative Evaluation
Renal Ultrasound97.70
Plain film X-ray77.88
Exam Under Anesthesia35.49
MRI10.60
Other methods0.03
Operative Management
SURGICAL METHOD OF CLOSURE
Modern Staged Repair of Exstrophy58.10
Complete Primary Repair of Exstrophy38.71
Radical Soft Tissue Mobilization (Kelly)0.01
Other methods0.02
IDEAL TIMING OF INITIAL CLOSURE
Within first 24 Hours of Life5.10
24 - 72 Hours or Life53.46
72 Hours - 28 Days of Life20.28
Beyond 28 Days of Life21.20
USE OF PELVIC OSTEOTOMIES FOR NEWBORN CLOSURES
Always Use29.96
Use in More Than Half of Cases13.36
Use in Less Than Half of Cases24.89
Never Use20.28
Do Not Perform Closure in Newborn Period11.52
USE OF PELVIC OSTEOTOMIES FOR PRIMARY CLOSURES BEYOND NEWBORN PERIOD
Always Use61.76
Use in More Than Half of Cases15.21
Use in Less Than Half of Cases11.10
Never Use7.37
Do Not Perform Primary Closures Beyond Newborn Period4.56
USE OF PELVIC OSTEOTOMIES FOR REVISION (SECONDARY) CLOSURES
Always Use58.06
Use in More Than Half of Cases14.75
Use in Less Than Half of Cases11.52
Never Use9.21
Do Not Perform Revision (Secondary) Closures6.46
OSTEOTOMY TECHNIQUE
Bilateral Innominate54.19
Vertical Iliac17.24
Posterior23.65
Other methods4.93
Do Not Know9.85
PUBIC SYMPHYSEAL FIXATION MATERIAL
Suture93.10
Wire4.61
Plate2.30
None5.10
Postoperative Management
METHOD OF IMMOBILIZATION
Cast (Spica or other)35.02
Bryant''s Traction31.33
Wrap26.27
External Fixation22.12
Buck''s Traction7.83
Padded Self-Adhesive Tape6.45
None4.61
LENGTH OF IMMOBILIZATION (AMONG THOSE WHO IMMOBILIZE)
Less Than 2 Weeks11.06
2-4 Weeks45.62
4-6 Weeks39.63
Greater Than 6 Weeks3.23
TUBES AND DRAINS
Externalized Ureteral Stents93.10
Suprapubic Tube88.48
Urethral Catheter58.99
Internal Ureteral Stents2.30
Surgical Drain22.11
METHODS OF PAIN CONTROL
Intravenous Opioids60.82
Oral Opioids23.04
Oxybutynin or Other Anticholinergics44.24
Diazepam or Other Benzodiazepines12.44
Dedicated Pain Management Consultants39.63
Epidural Catheters41.94
Tunneled Epidural Catheters13.36
Other Forms9.22

Conclusions
There appears to be a great deal of variation among the practices of current surgeons performing classic bladder exstrophy closure. The wide range of methods demonstrated by this survey suggest the need for more conclusive comparative studies to eluciate 'gold standard' practices, and improved consensus and communication of such 'gold standard' practices where and when they can, in fact, be determined.
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