Successful newborn sickle cell trait counseling program using health department nurses

Area of Science:

• Genetics
• Public Health
• Pediatrics

Background:

• Newborn screening identifies over 50,000 infants with sickle cell trait annually in the US.
• Infants with sickle cell trait indicate families at risk for sickle cell disease.
• Current national standards for newborn trait follow-up and family counseling are lacking, with limited or nonexistent services in many areas.

Purpose of the Study:

• To develop and implement an effective, practical, and affordable sickle cell trait counseling program for families identified through newborn screening.
• To establish standardized protocols and resources for trait counseling.
• To improve family understanding and management of sickle cell trait.

Main Methods:

• Development of a five-step counseling protocol, a counseling manual, a documentation checklist, and a parent fact sheet.
• Training of health department nurses to deliver the counseling program.
• Implementation of the program in West Tennessee through a collaboration between the Mid-South Sickle Cell Center and the Department of Health.

Main Results:

• The program successfully provided counseling to a significant percentage of families with infants testing positive for sickle cell trait.
• The developed protocol and resources supported effective trait counseling.
• The program demonstrated a practical and affordable approach to family counseling.

Conclusions:

• The jointly developed trait counseling program is effective, practical, and affordable.
• Utilizing health department nurses is a viable strategy for widespread trait counseling.
• Standardized protocols can improve the scope and availability of counseling for families with infants identified with sickle cell trait.