Care coordination guidelines for the care of people with spina bifida.
Alexander Van Speybroeck, Patricia Beierwaltes, Betsy Hopson and 4 others
PMID 33285645WHAT IT FOUND
These are expert recommendations for coordinating lifelong spina bifida care, not tested interventions.
They outline age-specific goals from newborn support to adult transition, but the authors state there is very little database evidence proving these coordination programs improve health outcomes.
Key findings
01The guidelines were developed through literature review and expert consensus, with many recommendations based on clinical consensus rather than published evidence.
02There are very few database studies demonstrating the benefits of spina bifida care coordination programs.
03The guidelines should be considered options rather than standards of care because evidence is lacking.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The authors state there are very few database studies demonstrating the benefits of care coordination programs. Many recommendations are based on clinical consensus of experts rather than published evidence. The guidelines are explicitly described as options, not standards of care. The paper identifies significant research gaps regarding effectiveness, barriers, and optimal communication methods.
The easy way to misread this
Do not treat these recommendations as evidence-based proof that care coordination improves health outcomes. The authors state there are very few database studies demonstrating benefits, and many guidelines are based on expert consensus rather than tested interventions.