OtherJournal of pediatric rehabilitation medicine2020

Prenatal counseling: Guidelines for the care of people with spina bifida.

Paige Terrien Church, Heidi Castillo, Jonathan Castillo and 5 others

PMID 33285644

WHAT IT FOUND

Spina bifida prenatal counseling guidelines recommend value-neutral, collaborative information, consultation between 18 and 20 weeks, and offering all options, including fetal closure, postnatal closure, adoption, and termination.

Key findings

01The guideline's stated primary outcome is to convey information about medical care and lifelong impact of spina bifida in a value-neutral, collaborative manner while understanding family needs, values, and beliefs.

02The guidelines recommend consultation between 18 and 20 weeks gestation, and note fetal closure is an option until the end of the 25th week gestation.

03The guidelines recommend offering all treatment options, including fetal closure, postnatal closure, termination, and adoption, using value-neutral language.

STILL TO COME

How it was doneWhat they found

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What it does not show

This paper reports no patients, no outcomes, and no effect estimates; it is a guideline, so its recommendations are not tested interventions. The guideline-writing method is said to be published elsewhere, so the full process, evidence grading, and consensus steps are not shown here. The authors state that limited studies describe parental experiences and decision-making variables, and that long-term outcome data for prenatal surgery are not yet available. They also state there is limited data on trauma-informed care, prenatal counseling approaches, and coping interventions for families. The field is described as rapidly changing because prenatal repair is advancing, so recommendations may need updating.

Declared interests

No author conflict or funding declaration is included in the supplied text. The article metadata lists U.S. Government and P.H.S. research support.

The easy way to misread this

Do not read this as evidence that fetal closure or postnatal closure improves outcomes. These are counseling recommendations, not tested interventions, and the paper reports no patient outcomes.

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The study

Certainty of evidence
Low

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    Cite

    Paige Terrien Church, Heidi Castillo, Jonathan Castillo, et al. Prenatal counseling: Guidelines for the care of people with spina bifida. Journal of pediatric rehabilitation medicine. 2020.

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