| Summary |
The term sickle cell disease (SCD) refers to a collection of hemoglobinopathies (inherited blood disorders) characterized by abnormal hemoglobin and produced through the homozygous inheritance of a sickle cell allele. Heterozygous inheritance results in a condition known as sickle cell trait (SCT). Individuals with SCT have a 50% chance of passing the gene to future offspring. In recent years mounting evidence has confirmed that SCT is also associated with several rare but serious complications including renal complications, renal cancer, spleen damage, and exercise-related sudden death. In the United States, sickle cell conditions primarily occur among African Americans. While all 50 states conduct newborn screenings which identify individuals with SCD and SCT, no studies have examined whether trait status is effectively conveyed to affected individuals or investigated knowledge of SCT among a large sample of African Americans. The purpose of the present study was to examine knowledge of SCT and SCD and to identify whether current procedures for trait notification in North Carolina effectively convey information about trait status, as well as its health and reproductive implications. A large sample of African-American college students (N = 258) completed questionnaires assessing knowledge of SCT and SCD. Participants reported their trait and disease status, the status of family members, and sources of sickle cell knowledge. Results indicated that participants were most likely to have received information about sickle cell from school. Though participants were generally familiar with the terms "sickle cell disease" and "sickle cell trait," many lacked knowledge regarding the genetic transmission of SCD, common symptoms, and treatment. A majority of participants were uncertain of their SCT status. Unfortunately, reported trait status of the participants could not be verified due to missing records. Nonetheless, participants who indicated that they had SCT or "thought" they had SCT scored higher on a measure of trait knowledge. Participants who had received information about sickle cell from their families showed greater trait knowledge than those who had not. Females were more likely than males to desire to know their trait status. Females also displayed higher levels of trait and disease knowledge than males. |
