New Initiatives in Spina Bifida Enhancing Care

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New Initiatives in Spina Bifida Enhancing Care

• Timothy J. Brei, MD, FAAP
• Riley Hospital for Children
• SBA Board of Directors and Liaison to PAC
• 2007 Spina Bifida Association National Conference
• Louisville, Kentucky

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New Initiatives - Goals

• To improve the quality of care for individuals
  with spina bifida
• To increase research related to spina bifida
• To increase awareness and knowledge about spina
  bifida

3
Professional Advisory Council Initiatives

• Revised Guidelines for Care
• Spina Bifida Clinical Care Network
• Spina Bifida Database Registry

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Spina Bifida Guidelines for Care

• New edition just released
• Previous edition published in 1994
• Designed for care providers in partnership with
  individuals and families
• Utilized research information, as available, to
  develop the guidelines
• Working Committee of
• Mark Merkens, Chair Karen Rauen
• Kathleen Sawin Rune Simeonsson
• Jack Fletcher Timothy Brei
• All PAC members contributed / edited / reviewed

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Spina Bifida Clinical Care Network

• Good care is happening around the country by many
  committed health care providers nurses,
  physicians, therapists in partnership with
  families and individuals with SB
• Structures of care provision vary widely
• SBA historically has had little information about
  types of services and structures of care
• Often very little interaction between care
  providers and local SBA chapters
• Very little linkage between clinics / care
  providers
• NHPC Listserv provides some interaction between
  providers but doesnt provide breadth of linkage
  / support

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Spina Bifida Clinical Care Network

• Capture information
• About structures of care and care providers
• Designed to be inclusive
• Know who is providing care, how care is provided
  and align with SBA
• About persons with SB of all ages
• Classification scheme
• Roster
• Clinic
• Program
• Comprehensive Center
• At each level
• Commitment to enhanced care coordination and
  services available

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Spina Bifida Clinical Care Network

• Ultimately important for looking at improving the
  quality of care
• Service
• Provider information, education and support
• Research

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Spina Bifida Clinical Care Network

• Service
• Provides better information about structures of
  care and barriers to care
• Provides useful data to SBA as information
  resource
• Provides way to facilitate / enhance service
• Does one clinics experience mirror another
  clinic
• Innovative ideas
• Advocacy partnership with SBA and local chapters

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Spina Bifida Clinical Care Network

• Provider information, education and support
• Enhanced communication between professionals
• Improve opportunities for professional continuing
  education
• Free discussion of care systems, struggles and
  how we can support each other
• More rapid dissemination of the latest research
  and care initiatives

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Spina Bifida Clinical Care Network

• Research
• Development of a database that gathers
  information about the SB care
• Eventually be able to look at some care outcomes
• Quality improvement initiatives
• Enhance ability of researchers to link with
  multiple people / sites for research
• Multi-site prospective collaborative research is
  necessary to answer many questions we have in SB
  care
• Encourage researchers to develop new research
  initiatives

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Spina Bifida Database Registry

• Project is being initiated to begin to gather
  data on measurable aspects of care
• Addresses clinical questions about current care
• Information will be obtained from chart and
  during clinic visits
• Provides mechanism to identify additional
  research questions
• Can outline issues that will allow for quality
  improvement initiatives
• Flexible database
• Changes / additions to database will be possible
  over time

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Spina Bifida Database Registry

• Project is in development
• Currently a first draft of database is being
  finalized for review
• Will require additional revision and PAC approval
• Some trial sites to identify and address changes
  which may be necessary
• Hurdles before widespread implementation
• Privacy
• Collection burden, and time / financial
  requirement for all data entry
• Infrastructure - data management / system
  requirements
• Develop ongoing working sub-committee to monitor
  / address database issues

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Summary

• These initiatives serve as the foundation
  necessary
• To improve the quality of care for individuals
  with spina bifida
• To increase research related to spina bifida
• To increase awareness and knowledge about spina
  bifida through partnerships and advocacy