Evaluation of spina bifida transitional care practices in the United States.
Maryellen S Kelly, Judy Thibadeau, Sara Struwe and 3 others
PMID 29125516WHAT IT FOUND
Spina bifida clinics vary widely in transition care.
Most discuss transition with patients, but few have written protocols or confirm adult provider visits. Readiness assessments are rare, and communication between pediatric and adult teams is inconsistent.
Key findings
01More than half of clinics have a formal transitional care program, but over 60% of those lack a written protocol.
02Only 30% of clinics ensure written and verbal communication between providers, and most do not confirm the patient's first adult visit.
03Clinics consistently assess mobility and bowel/bladder management, but rarely assess readiness for independent health tasks or discuss sexuality and pregnancy.
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 response rate was low (24%), which questions the generalizability of the results to all US clinics. The study relies on self-reported data from clinic staff, which may be biased. The survey did not ask about specific tools used to assess patient readiness or ability to function in the adult system. Incomplete surveys (less than 10% completed) were removed, potentially excluding some perspectives.
Declared interests
The authors reported no conflicts of interest.
The easy way to misread this
Do not assume that because a clinic has a transition program, it is standardized or effective. The study found that most programs lack written protocols and do not confirm that patients actually see adult providers, meaning gaps in care may persist despite the existence of a program.