Factors affecting the follow-up rate of infants with a hemoglobinopathy trait in a newborn screening and follow-up program.

Multiple factors may contribute to a less than satisfactory follow-up rate of infants with a hemoglobinopathy trait in many newborn screening programs. We retrospectively reviewed the information in a follow-up service of a regional community program in southern Alabama for infants with trait (hemoglobin AS or AC). The follow-up service received the screening results of infants with trait and the mothers' addresses and telephone numbers by two routes: (A) the sickle cell center newborn screening coordinator, for infants born at the university hospital (group A), and (B) the state health department, for infants born in other hospitals in a nine-county region (group B). The follow-up service notified mothers by mail and offered counseling; when no response was received, telephone contact and outreach service followed. From January 1988 through December 1989, 505 infants with trait were referred to the counseling service. Of these infants, 211 were in group A and 294 in group B. The follow-up rate was 78% and 49% in groups A and B, respectively (P less than .001). The mean duration from birth to testing results received by the follow-up service was 27 days for group A and 131 days for group B (P less than .001). Of mothers in groups A and B, 92% and 47%, respectively, resided in the same county where the follow-up service was located (P less than .001).(ABSTRACT TRUNCATED AT 250 WORDS)