Knowledge, Attitudes, and Perceptions of Healthcare Providers Regarding Sickle Cell Disease and Its Newborn Screening in Mbuji-Mayi, DRC
Main Article Content
Abstract
Background: Sickle Cell Disease (SCD) remains a major public health issue in sub-Saharan Africa. Newborn screening (NBS) programs are crucial for early diagnosis and improved survival. However, their effectiveness depends largely on healthcare providers’ knowledge, perceptions, and attitudes. This study assessed these aspects among providers in Mbuji-Mayi, Democratic Republic of the Congo.
Methods: A cross-sectional analytical study was conducted among 191 healthcare providers selected by stratified random sampling. Data were collected using a structured questionnaire and analyzed with STATA version 16. Descriptive statistics were used to summarize participant characteristics. Bivariate and multivariate logistic regression analyses were performed to identify determinants associated with knowledge of SCD.
Results: The median age of respondents was 29 years, with a predominance of females (71.20%). Most participants had a secondary or higher education level (97.38%) and were nurses (56.54%). About 76.44% had heard of SCD, mainly through television (64.38%) and radio (20.55%). Regarding attitudes, 74.66% believed in the importance of screening and supported early testing, while 98.95% favored referring newborns with SCD to hospitals. Perceptions revealed strong cultural beliefs: 82.20% associated SCD with mysticism or diabolical causes. Bivariate analysis showed that knowledge of SCD and its NBS was significantly associated with profession (crude OR = 36.30), prior examine SCD patients (crude OR = 36.00), and education level (crude OR = 14.15). In the multivariate model, two factors remained independently associated with adequate knowledge: being a medical doctor (adjusted OR = 23.382; 95% CI: 3.097–176.550; p = 0.0022) and having prior experience examining a patient with SCD (adjusted OR = 29.154; 95% CI: 3.584-237.150; p = 0.0016).
Conclusion: While awareness of SCD and its NBS among healthcare providers in Mbuji-Mayi is relatively high, significant misconceptions and cultural beliefs persist. Professional category and clinical experience with SCD are key determinants of knowledge. These findings highlight the need for targeted training and sensitization to strengthen early screening practices and address sociocultural barriers.
Article Details

This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.
References
- Roseff SD. Sickle cell disease: a review. Immunohematology. 2009, 25(2): 67-74. https://doi.org/10.21307/immunohematology-2019-234
- Tshilolo L, Kafando E, Sawadogo M, et al. Neonatal screening and clinical care programmes for sickle cell disorders in sub-Saharan Africa: Lessons from pilot studies. Public Health. 2008, 122(9): 933-941. https://doi.org/10.1016/j.puhe.2007.12.005
- Tshilolo L, Aissi L M, Lukusa D, et al. Neonatal screening for sickle cell anaemia in the Democratic Republic of the Congo: experience from a pioneer project on 31 204 newborns. Journal of clinical pathology. 2009, 62(1): 35-38.
- Mutombo Kabamba LA. Zoom sur la prise en charge du nouveau-né en milieu hospitalier congolais peu nanti : état des lieux, défis, perspectives d’avenir. Lubumbashi: Éditions Mfukam/Bwende. 2016: 50–52.
- Makani J, Cox SE, Soka D, et al. Mortality in Sickle Cell Anemia in Africa: A Prospective Cohort Study in Tanzania. Schrijver I, ed. PLoS ONE. 2011, 6(2): e14699. https://doi.org/10.1371/journal.pone.0014699
- Carlton J, Griffiths HJ, Horwood AM, et al. Acceptability of childhood screening: a systematic narrative review. Public Health. 2021, 193: 126-138. https://doi.org/10.1016/j.puhe.2021.02.005
- Shongo MYP, Mukuku O. Dépistage néonatal de la drépanocytose à Lubumbashi (RDC). Rev Infirm Congolais. 2018, 2: 62–63.
- Katamea T, Mukuku O, Mpoy CW, et al. Factors Associated with Acceptability of Newborn Screening for Sickle Cell Disease in Lubumbashi City, Democratic Republic of the Congo. Global Journal of Medical, Pharmaceutical, and Biomedical Update. 2022, 17: 5. https://doi.org/10.25259/gjmpbu_7_2022
- Aubry P, Ganzere BA. Hémoglobinoses: actualités 2020. Méd Trop. 2020.
- Guthrie R, Susi A. A Simple Phenylalanine Method for Detecting Phenylketonuria in Large Populations of Newborn Infants. Pediatrics. 1963, 32(3): 338-343. https://doi.org/10.1542/peds.32.3.338
- Ware RE, de Montalembert M, Tshilolo L, et al. Sickle cell disease. The Lancet. 2017, 390(10091): 311-323. https://doi.org/10.1016/s0140-6736(17)30193-9
- Mombo LE, Makosso LK, Bisseye C, et al. Acceptability of neonatal sickle cell disease screening among parturient women at the Paul Moukambi Regional Hospital in rural Eastern Gabon, Central Africa. African Journal of Reproductive Health. 2021, 25(3): 72-77.
- Tubman VN, Marshall R, Jallah W, et al. Newborn Screening for Sickle Cell Disease in Liberia: A Pilot Study. Pediatric Blood & Cancer. 2016, 63(4): 671-676. https://doi.org/10.1002/pbc.25875
- Katamea T, Mukuku O, Mpoy CW, et al. Newborn screening for sickle cell disease in Lubumbashi, Democratic Republic of the Congo: An update on the prevalence of the disease. Journal of Hematology and Allied Sciences. 2023, 3: 120-124. https://doi.org/10.25259/jhas_11_2023
- Treadwell MJ. Mental health and psychological resilience in sickle cell disease. The Lancet Haematology. 2023, 10(8): e569-e571. https://doi.org/10.1016/s2352-3026(23)00166-7
- Blake A, Asnani V, Leger RR, et al. Stigma and illness uncertainty: adding to the burden of sickle cell disease. Hematology. 2017, 23(2): 122-130. https://doi.org/10.1080/10245332.2017.1359898
- Diniz KKS, Pagano AS, Fernandes APPC, et al. Development and validation of an instrument to assess Brazilian healthcare professional providers’ knowledge on sickle cell disease. Hematology, Transfusion and Cell Therapy. 2019, 41(2): 145-152. https://doi.org/10.1016/j.htct.2018.08.003
- World Medical Association. Declaration of Helsinki – Ethical principles for medical research involving human subjects. Note of clarification on paragraph 30. WMA General Assembly, Tokyo, 2004.
- Odunvbun ME, Okolo AA, Rahimy CM. Newborn screening for sickle cell disease in a Nigerian hospital. Public Health. 2008, 122(10): 1111-1116. https://doi.org/10.1016/j.puhe.2008.01.008
- Knight-Madden J, Asnani M, King L, et al. Sickle cell disease in the Caribbean: Progress in newborn screening, clinical care, and research through collaboration. The Lancet Haematology. 2023, 10(8): e581-e582. https://www.thelancet.com/haematology
- Nnodu OE, Adegoke SA, Ezenwosu OU, et al. A Multi-centre Survey of Acceptability of Newborn Screening for Sickle Cell Disease in Nigeria. Cureus. Published online March 21, 2018. https://doi.org/10.7759/cureus.2354
- Marsh VM, Kamuya DM, Molyneux SS. All her children are born that way: gendered experiences of stigma in families affected by sickle cell disorder in rural Kenya. Ethnicity & Health. 2011, 16(4-5): 343-359. https://doi.org/10.1080/13557858.2010.541903
- Odunvbun ME, Okolo AA, Rahimy CM. Newborn screening for sickle cell disease in a Nigerian hospital. Public Health. 2008, 122(10): 1111–1116.
- Streetly A, Latinovic R, Hall K, et al. Implementation of universal newborn bloodspot screening for sickle cell disease and other clinically significant haemoglobinopathies in England: screening results for 2005–7. Journal of Clinical Pathology. 2008, 62(1): 26-30. https://doi.org/10.1136/jcp.2008.058859