SCREENING NEWBORNS FOR SICKLE CELL DISEASE IN GHANA

Abstract

INTRODUCTION: Screening of newborns for sickle cell disease (SCD) allows early initiation of prophylactic therapy, parental education, and comprehensive management, which results in reduced mortality. Since April 1993, a demonstration project to develop and implement a program of newborn screening for SCD has been conducted in Kumasi, Ghana, by the Comprehensive Sickle Cell Center at the Children's Hospital of Philadelphia in collaboration with the Ministry of Health and other institutions in Ghana. OBJECTIVE: Our goal was to assess the program of screening and follow-up of children with SCD in Ghana. METHODS: Infants are screened at birth or at well-infant visits within days or a few weeks after birth. Mothers are asked to come for results within 4 weeks, and failing that, an extensive tracking system is used to deliver results to the homes of families with infants with possible SCD. Tracking relies solely on information obtained from mothers at the time of screening. The goal is to enroll infants with possible SCD into the sickle cell clinic by 8 weeks of age. Pregnant women, parents with children, and the general public are educated regularly about the screening program. Children with SCD receive comprehensive care through the Sickle Cell Clinic at Komfo Anokye Teaching Hospital (Kumasi, Ghana). RESULTS: From February 13, 1995 (when newborn testing was started), to December 31, 2005, a total of 202 244 infants were screened through 8 public health institutions and 14 private clinics in Kumasi and 1 private maternity center and 1 public health Center in Tikrom, a nearby, rural community. A total of 3745 (1.9%) infants were identified as having possible SCD with the following hemoglobin phenotypes according to isoelectric focusing: 2047 (1.04%) fetal sickle cell hemoglobin; 1684 (0.83%) fetal SC hemoglobin; and, 14 (0.003%) fetal SA hemoglobin (Table 1). CONCLUSIONS: Screening and follow-up of newborns for SCD is feasible in a developing country in Africa. Extra effort in tracking is necessary to ensure that infants with disease are found early and referred for medical management. TABLE 1.Screening and Tracking Results: February 1995 to December 2005No.%Total No. of infants screened202 244100.0Infants with possible SCD37451.9 (of infants screened)Under active tracking (newly diagnosed)(125)3.3 (of infants with possible SCD; excluded)Total possible SCD accounted for362096.7 (of infants with possible SCD; reported)Lost to follow-up/never found(494)13.6 (of infants with possible SCD; reported)Dead before contact made(34)0.9 (of infants with possible SCD; reported)No. contacted with results (eligible for enrollment)309285.4 (of infants with possible SCD; reported) Came for results65121.0 (of those contacted) Through home visiting244179.0 (of those contacted)Eligible but not enrolled after contact47715.4 (of those eligible)Enrolled in clinic261584.6 (of those eligible)Known deaths after enrollment1094.2 (of those enrolled)