Inadequate Community Knowledge About Sickle Cell Disease Among African-American Women

Background: Federal legislation was passed in 1972 initiating genetic screening and community education about sickle cell disease (SCD). Few assessments have examined the impact of these programs. The aim of this study is to assess existing knowledge about SCD among African-American women in St. Louis, MO.

Methods: We conducted a cross-sectional telephone survey of African-American women, 18-30 years of age. Participants were recruited through random-digit dialing in six ZIP codes with greater than 75% African-American residents. The survey contained questions exploring four content domains about SCD: general knowledge, genetics, management and educational resources.

Results: A total of 264 women were contacted; 30% were unable to complete the survey and participate further because they were unaware of SCD. One-hundred-sixty-two women met eligibility criteria, agreed to be surveyed and were included in the study. Ninety-one percent of the participants believed that SCD was a hereditary blood disorder, but only 9.3% understood the inheritance pattern. Eleven percent of the women were unaware of their sickle cell trait status. Most women recognized pain (94%), infections (80%) and strokes (40%) as complications of SCD.

Conclusion: New strategies are needed to enhance awareness of SCD among African-American women of childbearing age.