Guidelines for the Care of People with Spina Bifida
An initiative of the Spina Bifida Association’s Spina Bifida Collaborative Care Network* (SBCCN)

 

Q: What are the Health Care Guidelines?
A: The Guidelines cover 25 care topics (see list below) and provide evidence-based and medical expert guidance on providing care for people with Spina Bifida (SB) from birth through adulthood.

 

Q: Why are they important?
A: These Guidelines provide the best and most scientifically-based treatment and care guidance for
persons living with Spina Bifida throughout their ever-longer and higher-quality lives. They give Health Care Providers a roadmap on how to best care for a person with Spina Bifida.

 

Q: How were they developed?
A: Close to 100 volunteer medical experts from around the world have been working for three years to bring these to publication. A total of 25 workgroups consisting of subject matter experts from around the world were formed and they evaluated the literature and evidence-based research and created an initial draft of the Guidelines by topic and by age – from birth through adulthood.

 

Q: What was the charge for the workgroups in the first year?
A: They workgroups did the following:

  • Reviewed literature and evidence-based research related to SB in their topic area,
  • Developed guidelines related to their topic area, which they delineated by age groups,
  • Identified whether the guideline proposed was based on evidence from the medical
    literature or from expert consensus, where the literature support was weak or lacking,
  • Identified process or health outcome measures appropriate for the particular Guideline.

 

Q: After the initial drafts were completed, what was the next step?
A: The first face-to-face meeting of the experts was held in March 2017, prior to the start of the third
World Congress on Spina Bifida, organized and sponsored by the Spina Bifida Association. The
workgroups reviewed the Guideline drafts, and comments were shared with the workgroups for
consideration and inclusion of the feedback.

 

Q: With so many people involved, how did you maintain consistency across 25 Guidelines?
A: After feedback was incorporated from the World Congress, the Guidelines were sent to the SBA,
where a careful, structured review process was implemented to help ensure consistency. SBA sends the formatted Guideline to an executive committee for final review that includes:

  • Appropriate references
  • Cross-referencing
  • Relevance and feasibility
  • Quality health indicators are clearly identified
  • Readability
  • Disability sensitive language

 

Q: How and where will they be published and available?
A: The Guidelines will be available on SBA’s website – spinabifiaassociation.org. We are also creating an app for mobile devices.

 

Q: Why did it take three years to complete the Guidelines?
A: All the work was done by volunteer healthcare subject matter experts who donated their time
because they are passionate that adults with Spina Bifida receive the best care possible.

  • The SBCCN unites individuals with Spina Bifida and their families, physicians, nurses, clinics,
    Chapters, the Centers for Disease Control and Prevention (CDC), and other like-minded groups. The SBCCN’s goal is to define standards of care, identify research priorities, and ultimately create more quality, affordable, and accessible health care for people with Spina Bifida across their lifespan.
  • First Guidelines coming out of the National Spina Bifida Patient Registry

 

Available: October 2018