Parents' Knowledge and Awareness of Sickle Cell Disease in the Jazan Region, Kingdom of Saudi Arabia: A cross-sectional study

Abstract

Sickle cell disease (SCD) is a significant genetic health concern worldwide. The Jazan region in Saudi Arabia has the second-highest rate of SCD, emphasizing the need for comprehensive data on disease knowledge and awareness in this region. This study evaluated parents' understanding of SCD in the Jazan region and determined the knowledge gap. After expert consultation and a literature review, we conducted an online survey to enroll 384 Saudi citizens over 18 years of age living in Jazan, aiming for a 95% confidence level. The data was analyzed using SPSS v23.0. Most participants (n=358; 93.2%) were aware of SCD, with 303 (78.9%) knowing it is a blood disorder. About 331 (82.6%) agreed that premarital investigation is necessary to reduce SCD incidence, and 276 (71.9%) knew that genetic counseling could help manage it, but only 95 (24.7%) had checked their genotype. Over one-third of participants (n=144; 37.5%) believed genetic testing should be conducted in primary school, while 52 (13.5%) understood the likelihood of a child inheriting SCD if both parents had sickle cell traits. The study revealed a good awareness of SCD but significant gaps in the understanding of its genetic transmission, highlighting the need for expansive education and awareness campaigns in the Jazan region to improve genetic counseling and health management decisions.