Acceptability of Newborn Screening for Sickle Cell Disease Among Pregnant Women in Bukavu, Democratic Republic of the Congo: Factors Associated With Uptake and Implications for Public Health

Abstract

Introduction: Sickle cell disease (SCD) is a serious genetic disorder, often diagnosed early, which can lead to significant complications. Although newborn screening (NBS) for SCD is an effective intervention for reducing the impact of SCD in developed countries, it remains poorly accessible in sub-Saharan Africa, where the disease is particularly prevalent. This study assessed the acceptability of NBS and the factors influencing it among pregnant women in Bukavu, in the Democratic Republic of the Congo. Methods: A survey of pregnant women in Bukavu was conducted between December 1, 2023, and January 31, 2024. Data were collected using a semi-structured questionnaire covering sociodemographic characteristics, knowledge, and attitudes toward NBS. Multiple logistic regression was used to identify factors associated with NBS acceptability. Results: Out of a total of 350 respondents approached, 300 voluntarily agreed to answer our questionnaire, resulting in a response rate of 85.7%. Among them, the acceptability rate of NBS was 80.0%. Logistic regression analysis indicated that recognizing SCD as a blood disorder was strongly linked to the acceptability of NBS (adjusted OR = 2.6; 95% CI [1.4-4.9], p=0.002). In addition, individuals who were aware that SCD could be diagnosed at any point in life were more inclined to accept NBS (adjusted OR = 2.0; 95% CI [1.1-3.8], p=0.024). There were no significant associations observed with age, marital status, educational level, professional occupation, religion, knowledge of electrophoretic status, and awareness that SCD can be diagnosed in the neonatal period, or awareness that SCD can be diagnosed at any other time in life. Conclusion: This study demonstrates a significant level of acceptability of NBS among pregnant women in Bukavu, which is influenced by their understanding of SCD and knowledge about diagnostic possibilities. Implementing awareness-raising initiatives focused on key topics, such as the benefits of NBS, the implications of early diagnosis, the availability of follow-up care, increasing knowledge about SCD as a blood disorder, and its potential for diagnosis at any stage of life, could further enhance acceptability.

Keywords: Bukavu; acceptability; newborn screening; sickle cell disease.

Figure 1

Respondents' (N=300) general knowledge of sickle cell disease.

Figure 2

Beliefs of respondents (N=300) about sickle cell disease.

Figure 3

Attitudes of respondents (n=300) toward sickle cell screening.