Health promotion and preventive health care service guidelines for the care of people with spina bifida.
Ellen Fremion, David Kanter, Margaret Turk
PMID 33285642WHAT IT FOUND
Spina bifida preventive care guidelines rest mostly on expert consensus and general screening, not proof of tested interventions.
They flag mobility, daily activity, bowel/bladder, pain, and swallowing changes as conditions to monitor across ages.
Key findings
01The guideline search included 19 articles: 13 observational studies, 2 qualitative studies, 2 narrative literature reviews, and 2 health promotion guidelines.
02Evidence was limited and the health promotion guidelines were not rated above low; expert opinion and general preventive care guidance formed most recommendations.
03Intervention evidence was sparse; one home-based case management and self-management intervention initially showed a decrease in emergency department use, but there was no significant change in emergency department use or hospital admissions after two years.
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 evidence was rated not above low, so most recommendations are expert consensus rather than tested interventions. The literature search found only 19 articles. Major gaps remained in preventive care delivery, self-management, and acute care prevention. No studies found by the search evaluated interventions to prevent emergency department use, hospital admission, morbidity, or mortality. One home-based case management intervention initially showed less emergency department use, but the result was not significant after two years. Because this is a guideline review, it does not provide patient-level outcomes from a new study. The supplied text does not report author conflicts or funding.
Declared interests
The supplied text does not report author conflicts or funding. The metadata lists U.S. government Public Health Service research support.
The easy way to misread this
Do not read these guidelines as proof that preventive counseling improves health outcomes in spina bifida. The paper states the evidence is limited, most recommendations are expert consensus, and no intervention studies showed sustained reductions in emergency department use or hospital admissions.