Sickle Cell Disease Awareness, Willingness to be Tested and Willingness to Participate in Genetic Counseling Among African Immigrants of the Democratic Republic of Congo in North Texas




Njesada, Ndolembai S.


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The aim of this exploratory cross-sectional research was to assess the awareness of Sickle Cell Disease (SCD), the willingness to be screened for SCD, and the willingness to participate in genetic counseling among African immigrants from the Democratic Republic of Congo who resided in North Texas through in-person surveys. A structure questionnaire containing 36 SCD questions was administered to DRC immigrants residing in Dallas-Fort-Worth-Denton-Arlington metroplex of North Texas between August and November 2019. One hundred and eighty-six were successfully interviewed. SCD awareness was very high among participants (97%); however, only about 65% agreed to participate in SCD testing and 72% to genetic counseling. Statistical significance in the levels of awareness, willingness to be screened and to participate in genetic counseling was noted between males and females. Education was negatively associated with awareness of SCD. Those who had less than high school education had higher odds of being aware of sickle cell compared to those who had more than high school education. However, those who had refugee immigration status had seven times higher odds of being willing to participate in SCD testing compared to permanent resident status. There is a need for SCD education among immigrants from endemic countries like DRC, given that almost half of the participants were not willing to participate in SCD educational programs. The need of mix methods studies to understand the various patterns of association related to all the factors associated with sickle cell disease is warranted.