Assessing the Public Understanding of Haemoglobinopathy Screening in the United Kingdom

Background Haemoglobinopathy screening is a key public health tool for early detection and prevention of inherited blood disorders, such as sickle cell disease. With the introduction of a national antenatal screening programme in the United Kingdom (UK), laboratory techniques and diagnostic accuracy have improved, but public knowledge and understanding still influence screening programme success. This study examined public understanding of haemoglobinopathy screening in the West Midlands region of England, a high-prevalence region where many women are routinely tested during pregnancy. The study aimed to ascertain whether people were aware of their screening status and understood the result implications. Methods A cross-sectional survey was conducted in June 2024. Participants were recruited in the retail area of Wolverhampton city centre in the West Midlands region of England. Participants accessed a questionnaire via JISC Online Surveys. The questionnaire included demographic information, multiple-choice and free-text questions. Quantitative data was analysed using the Kruskal Wallis and Mann Whitney U tests, whilst qualitative data was analysed using thematic analysis. Responses were obtained from 55 participants. Results Of the 55 participants who completed the survey, the majority were female (84%) and between the ages of 35–44 years. Most were of African or African Caribbean ethnicity (71%). Although 53% reported a good self-perceived understanding of haemoglobinopathies, 60% believed that they were inadequately informed about the screening process. Of the 60% who had been pregnant in the last 10 years, only 20% were confident about their knowledge of screening. No associations between knowledge or testing history were found with age group, gender, ethnicity, history of pregnancy, or parental status. Poor awareness, fear and stigma, unknown screening consequences, cultural and linguistic barriers were identified in qualitative analysis. Conclusion The need for increased awareness of haemoglobinopathy screening was a strong recurring theme. Increasing public comprehension through social media, schools, community and religious centres and through targeted communication by relevant health professionals would address this lack of awareness. Strategies are required for overcoming various challenges regarding racial disparities, language barriers, and difficulties in accessing health information to ensure a better understanding of the importance of screening.