Spina Bifida Clinic Survey

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Spina Bifida Clinic Survey

• Thomas S. Webb, MD, MSc
• PAC Member
• University of Cincinnati and
• Cincinnati Childrens Hospital

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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

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Survey Development

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

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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

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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 the survey
• Response rates were generally equal across each
  region of the U.S.
• Respondent usually Nurse Manager or Clinical
  Coordinator

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136 (113-160)
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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

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Patient Populations Served

• 41 of clinics see children and adults
• 5 clinics see only adults
• 51 see children only

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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

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Funding

• Patient generated income
• Medicaid gt 50
• Medicare lt 10

• External funding
• 75 of clinics

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Services Available Through Clinics

• Care Coordination
• Ancillary Testing
• Provider Types
• Assessments
• Interventions

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Care Coordination
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Ancillary Testing
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Provider Types Available in Clinics
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Description of Office Visit

• Patient stay in one room and specialists come to
  the patients 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

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Assessments Available in Clinics
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Clinical Interventions Available in Clinics
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Clinic Involvement with SBA Chapters
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Provider Types Considered Essential
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Interventions Considered Essential
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Services Identified as Essential orServices
Available in an Optimal Spina Bifida Clinic
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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

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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.

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Thank You!Questions?
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