Good follow-up is vital for the provision of health surveillance, penicillin prophylaxis, medical care and supportive service for infants with sickle cell disease and is essential for the provision of counseling and family testing to infants with sickle cell trait and hemoglobinopathy trait. However, the follow-up for infants identified as having sickle cell disease or trait has been less than satisfactory in many newborn screening programs. Initial and long-term follow-up of infants with disease can be improved by a community program-based follow-up network and patient tracking system to ensure the provision of comprehensive care to every patient with sickle cell disease. Follow-up rate of infants with disease or trait can be improved when the mothers are better informed about the significance and importance of newborn sickle cell screening. Anxiety and emotional stress associated with initial notification of screening results can be reduced when the mothers are more aware of the purpose for the screening. A long-term follow-up network and patient tracking system will be established and centered in the community program, the Sickle Cell Association, Gulf Coast, Alabama, to assure that all infants with disease will, 1) receive optimal comprehensive medical care; 2) take daily prophylactic penicillin; and 3) receive appropriate social-emotional support and medical coverage. Education on newborn sickle cell screening will be incorporated into an ongoing prenatal education session for the expecting mothers who attend prenatal clinic. A pre- and post-test will be given to the mother to evaluate their knowledge on the newborn sickle cell screening. Mothers of infants with sickle cell trait attending counseling session will be given pre-and post-tests and a """"""""State-Trait Anxiety Inventory"""""""" to assess their anxiety level. Mothers of infants without disease or trait attending for a health maintenance visit at the Resident Continuity Clinics in USA Children's Medical Center will be given pre-test and the anxiety screening. These mothers will serve as the control for anxiety level and general knowledge about sickle cell trait and disease. The follow-up rate of infants with disease and trait will be compared between the mothers who have received prenatal education and those who have not. A model prenatal education program on newborn sickle cell disease and educational material will be developed. Prenatal education on newborn screening for sickle cell disease will be introduced to become part of prenatal education in prenatal clinics.
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