Connaissances et comportements de 50 familles congolaises concernées par la drépanocytose: une enquête locale

INTRODUCTION: Sickle cell disease is a very common disease in the Democratic Republic of the Congo, but it is poorly known despite having an impact on the morbi-mortality. Our study aimed to evaluate the extent of awareness and attitudes of families affected by sickle cell disease as well as the impact of this disease in their daily lives. METHODS: We conducted a cross-sectional study of a unique non-random sampling from 50 families affected by sickle cell disease in Mbujimayi, Democratic Republic of the Congo, from 15 June to 15 August 2015. Participants were interviewed using a standardized questionnaire. RESULTS: This study focuses on 50 families affected by sickle cell disease; medical characteristics were found only in first children affected by sickle cell disease in each household. Less than 10% of families had minimally ill children. Fifty families were interviewed, of whom 22 had more than one child with sickle cell disease. The average age at diagnosis was 1 years. Diagnosis was based on clinical examination in 42% (21) of cases. Each first child affected by sickle cell disease had an average of 3.4 crises per year, 4 episodes of fever per year, received an average of 1.9 transfusions per year and was hospitalized an average of 3 times per year. Thirty-one families (62%) didn’t have sufficient monthly income to help their children to manage sickle cell disese, 48 (96%) families hoped that a reference sickle cell centre would be established in Mbujimayi and 47 (94%) would accept to subscribe to health insurance if the annual amount were between $50 and $100. CONCLUSION: The extent of awareness among families directly affected by sickle cell disease in Mbujimayi, Democratic Republic of the Congo, is low. This has a direct impact on the management of children with sickle cell disease. The socioeconomic status of these families is also a factor which should be taken into account. The establishement of a reference center and the possibility to fix an annual amount for the treatment of patients would be a strategic approach to implement the awareness and the attitudes of families in relation to this disease having a direct impact on the morbi-mortality of patients.