Centers of Excellence Criteria

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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 criteria deemed vital to treating the complex needs of infants and children with bladder and cloacal exstrophy:

Medical Director:

  • Board-certified urologist/surgeon experienced in and committed to the care of patients with bladder exstrophy
  • At least 5 years post-fellowship training in pediatric urology/surgery
  • Clinical database with greater than 50 bladder exstrophy patients actively followed in the practice.

Care Coordinator/Educator:

  • Provides intake, triage, and coordination of exstrophy related clinic visits
  • Responsible for providing age-appropriate education to patient and family
  • Performs/Coordinates care coordination with members of other disciplines

Collaborating Disciplines:          

  • Identified orthopedic surgeon, pediatric anesthesiologist, radiologist, plastic surgeons and, neurosurgeon and gastroenterologist with expertise and interest in comprehensively treating child with bladder exstrophy.

Behavioral Health Specialist:

  • Board certified in their discipline (master’s degree, doctorate or MD in child psychiatry, psychology, or social work/counseling)
  • Provides support to patient and families throughout life span including resource interventions, education, and individual, family and group therapy
  • Experience with bladder exstrophy

Nurses/ Nurse Practitioners/Physician Assistants/Ancillary provider staff (ie medical assistants):

  • Inpatient nursing staff experienced/specialized training with bladder exstrophy and reconstructive surgeries (greater than 10 surgeries a year)
  • Dedicated clinic staff familiar with catheterization training, catheterization management, bladder irrigations
  • Experienced provider in area of “location and establishment of durable medical equipment and supply companies”
  • Video or non-video urodynamics center

Pelvic Floor Physical Therapist (preferred, not required):

  • Physical therapist with interest in specific pelvic floor physical therapy and biofeedback.

Evaluation and Quality Improvement: (5-10 years reapplication) (Many institutions are at the beginning stages of this portion of the application.  If you do not currently have these criteria in place, how do you plan to do in next 5 years? 10 years?):

Research: 

  • Engaged in single or multi-center research (preferably interdisciplinary)
  • Recording and sharing information collected either through own registry or through participation in a national/international registry
  • Patient-centered and family-centered outcome studies

Advocacy:

  • Arrangements for transition from children to adult services
  • Support group activities and/or collaboration with A-BE-C events
  • Provision of educational resources and teaching material
  • Information regarding advocacy/support groups (A-BE-C) provided to families
  • Publicly support A-BE-C, representative of team attends A-BE-C meeting

Accessibility/ Marketing:

  • Create a website that includes:
    • Link to A-BE-C website
    • Contact information for intake coordinator
    • Background and training information for members of team
    • Resources available to families within hospital system and in community (accommodations, transportation, etc.)

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.

Download the Application