Prenatal compared with postnatal cleft diagnosis: what do the parents think?

Area of Science:

• Medical Genetics
• Pediatric Surgery
• Obstetrics and Gynecology

Background:

• Prenatal diagnosis of cleft lip with or without cleft palate (CLP) via ultrasound has been available since the 1980s.
• Improved prenatal detection increases demand for comprehensive information and counseling.
• Understanding parental experiences with prenatal and postnatal consultations is crucial for optimizing care.

Purpose of the Study:

• To evaluate parental satisfaction with prenatal and postnatal consultations for CLP.
• To compare experiences of families receiving diagnoses prenatally versus postnatally.
• To identify areas for improvement in information delivery regarding CLP.

Main Methods:

• A questionnaire-based study included families referred for CLP between January 2006 and September 2010.
• Evaluated 36 families on prenatal counseling and 46 parents on postnatal counseling.
• Assessed satisfaction with information source, consultation structure, and overall experience.

Main Results:

• Families informed by cleft teams reported higher satisfaction than those informed by ultrasound units.
• Most families were satisfied with consultation structure and postnatal counseling.
• Many parents desired prenatal diagnosis information and improved initial counseling at referring units.

Conclusions:

• Early information delivery by specialized cleft teams is preferred by parents.
• Enhancing prenatal counseling at referring ultrasound units is essential.
• Optimizing the timing and source of CLP diagnosis information improves parental satisfaction and support.