Abstract
Introduction: la drépanocytose est très fréquente en République Démocratique du Congo (RDC). Cette étude évalue le niveau de connaissance et les comportements de familles concernées ainsi que l’impact de cette maladie dans leur quotidien.
Méthodes: c’est une étude transversale, sur un échantillon non aléatoire, menée du 15 juin au 15 août 2015 auprès de 50 familles concernées par la drépanocytose à Mbujimayi en RDC.
Résultats: sur 50 familles étudiées, 22 familles avaient plus d’un enfant drépanocytaire. L’âge médian au diagnostic était de 1 an. Le diagnostic était clinique dans 42% (21) des cas. Chaque premier enfant drépanocytaire faisait en moyenne annuellement 3 crises douloureuses, 4 épisodes de fièvre, recevait 2 transfusions sanguines et était hospitalisé 3 fois. 62% (31) des familles n’avaient pas un revenu mensuel suffisant pour la prise en charge de leur(s) enfant(s), 96% (48) des familles souhaite la création d’un centre de référence de prise en charge et 94% (47) acceptent de s’y abonner si le montant annuel est inférieur à 100$.
Conclusion: le niveau des connaissances dans les familles concernées par la drépanocytose à Mbujimayi est faible. La création d’un centre de référence et la possibilité d’un montant fixe annuel pour la prise en charge des patients est une stratégie qui peut être mise en œuvre à Mbujimayi afin d’améliorer la prise en charge des enfants la drépanocytaires.
English abstract
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.
Key words: Sickle cell adisease, Mbujimayi, Democratic Republic of the Congo, awareness, socioeconomic attitudes