Centers of Excellence Criteria
Association for the Bladder Exstrophy Community’s (A-BE-C’s) Centers of Excellence program is the first to identify criteria for the highest standards of treatment for bladder and cloacal exstrophy, including post-operative and long-term care.Each Center of Excellence on the list meets the following 10 criteria deemed vital to treating the complex needs of infants and children with bladder and cloacal exstrophy:
- Program is led by a physician/medical director who has at least five years post-fellowship training in pediatric urology/surgery.
- Hospital actively follows a sufficient number of patients to be exposed to the diverse manifestations of bladder and cloacal exstrophy and offer wide array of treatment options.
- Program delivers care to patients in a team model that addresses the broad spectrum of symptoms and treatment options for bladder and cloacal exstrophy.
- Care team collaborates with identified orthopedic surgeons, pediatric anesthesiologists, radiologists, plastic surgeons, and when necessary, neurosurgeons and gastroenterologists who have expertise and interest in comprehensively treating child with bladder and cloacal exstrophy.
- Hospital offers inpatient nursing and outpatient staff who have received specialized training and are experienced in bladder and cloacal exstrophy reconstructive surgeries, and are familiar with catheterization training, catheterization management, and bladder irrigations.
- Board-certified behavioral health specialists are included in the care team to provide support to patients and families throughout the lifespan of treatment, and offer resource interventions, education, and individual, family and group therapy.
- A pelvic floor physical therapist with an interest in specific pelvic floor physical therapy and biofeedback is included on the care team.
- The hospital engages in single or multi-center research to share their patient information and program results. This information should be collected either through its own registry or through participation in a national/international registry.
- Protocols are provided to transition pediatric patients into adult services at the proper time.
- Program offers patients and families access to current information about bladder and cloacal exstrophy through support group activities and collaboration with A-BE-C events.
The Centers of Excellence is an evolving list that currently only includes U.S. hospitals that completed A-BE-C’s application process and passed the screening criteria. A-BE-C expects the list to grow as more hospitals in the U.S. and other countries apply for this designation.
The “Center of Excellence” designation is not an accreditation or certification, by the Association for the Bladder Exstrophy Community (A-BE-C) and should not be held out to, or understood by, the public or any third party as indicative of A-BE-C’s opinion that those who attain it have met any standard of quality or achievement. Designation is self-reported and peer reviewed by A-BE-C’s medical advisory board and staff.