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Spina Bifida Clinic Survey

Spina Bifida Clinic Survey. Thomas S. Webb, MD, MSc PAC Member University of Cincinnati and Cincinnati Children’s Hospital. Purpose. Develop an overall picture of the status of spina bifida clinics in the United States Number, geographic distribution, affiliations

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Spina Bifida Clinic Survey

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  1. Spina Bifida Clinic Survey Thomas S. Webb, MD, MSc PAC Member University of Cincinnati and Cincinnati Children’s Hospital

  2. Purpose • Develop an overall picture of the status of spina bifida clinics in the United States • Number, geographic distribution, affiliations • Identify the types of services offered by spina bifida clinics and assess the variability across sites • Capture what spina bifida clinic providers believed to be the most important services

  3. Survey Development • Spina Bifida Association (SBA) • Centers for Disease Control and Prevention (CDC) • Agency for Healthcare Research and Quality (AHRQ) • Delmarva Foundation

  4. Survey Timeline • 2004 Survey planned by SBA • 2005 CDC funding; AHRQ contracts for survey with Delmarva Foundation • 2006 Review of survey at multidisciplinary meeting • 2007 Report of survey at SBA Annual Meeting

  5. Participants • All 172 sites listed as SBA-affiliated clinics were sent surveys • 73 surveys (42%) were returned • 5 sites reported they were no longer operating • 68 sites (40%) completed thesurvey • Response rates were generally equal across each region of the U.S. • Respondent usually Nurse Manager or Clinical Coordinator

  6. 136 (113-160)

  7. Clinic Encounters • Frequency of clinics • 28% average weekly clinics • 40% average monthly clinics • Range from twice per year to four times per week • Patient load ranges from 4 – 60 patients/day • Median number is 12 patients/day • Most see less than 15 per day • Clinic hours range from 2 – 12 hrs/session • 50% have 4 hour clinics • 20% have 8 hour clinics • 15% are 4-6 hours in duration

  8. Patient Populations Served • 41% of clinics see children and adults • 5 clinics see only adults • 51% see children only

  9. Size of Program • Programs serving patients aged 0-21 years old • Range 2 – 870 patients in program • Median 150 patients in program • Programs serving patients over 21 years old • Range 1 – 160 patients in program • Median 25 patients in program

  10. Patient generated income Medicaid: > 50% Medicare: < 10% External funding 75% of clinics Funding

  11. Services Available Through Clinics • Care Coordination • Ancillary Testing • Provider Types • Assessments • Interventions

  12. Care Coordination

  13. Ancillary Testing

  14. Provider Types Available in Clinics

  15. Description of Office Visit • Patient stay in one room and specialists come to the patient’s room for the visit – 76% • Specialists have certain exam rooms within the location where the clinic is held, and patients move from room to room for each specialist visit – 12%

  16. Assessments Available in Clinics

  17. Clinical Interventions Available in Clinics

  18. Clinic Involvement with SBA Chapters

  19. Provider Types Considered Essential

  20. Interventions Considered Essential

  21. Services Identified as Essential orServices Available in an Optimal Spina Bifida Clinic

  22. Conclusions • There is great variability in the size, services, and frequency of sessions of Spina Bifida Clinics. • Funding is a concern for most clinics. • Over half of the clinics receive the majority (60% or more) of their patient generated income from Medicaid. • 25% rely completely on visit revenue • 75% receive some external support

  23. Conclusions (cont.) • Only 1/3 of clinics are involved with their local SBA chapter. • Clinics would like to offer more services, including adolescent and transition care. • Half of the clinics report participating in research and 60% report ongoing quality improvement initiatives.

  24. Thank You!Questions?

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