Barriers to healthcare for sickle cell disease patients in the Democratic Republic of Congo

Abstract

Introduction: The World Health Organization estimates that up to 70% of sickle cell deaths in sub-Saharan Africa are preventable by implementing measures that include early diagnosis, information, education and prophylaxis of infections. In the city of Kisangani, in the Tshopo province of the Democratic Republic of the Congo, identifying difficulties in access to care will help guide interventions to fight sickle cell anemia. The aim of this study was to identify the barriers preventing sickle cell patients from accessing care in the Democratic Republic of Congo. Methods: This cross-sectional study involved 158 sickle cell patients who consulted at least once in one of the general hospitals in Kisangani in 2010. The interview guide included questions about social representations and knowledge about the disease, perceptions and knowledge of the provision of health services and financial accessibility to health facilities. Results: For 44.9% of the study participants attribute sickle cell disease to demonic origin or divine curse. The cost of care associated with sickle cell anemia is unaffordable for 93.6% of participants. The 77.8% and 44.9% indicated that it is in the church and in traditional healer's places respectively that the care is more prompt than in formal health system. However, only 22.8% patients in health facilities felt that they waited a long time before commencing treatment. Conclusion:Sickle cell control in Kisangani should focus on raising awareness, information and education of population, sickle cell disease patients and their families. In addition, centers for the comprehensive management of sickle cell disease supported by the state should be developed. Similarly, research on medicinal plants used by traditional healers is necessary.

Students’ knowledge on sickle cell disease in Kisangani, Democratic Republic of the Congo

“…This would then be in accordance with the Bazuaye et al study in which 64% of students had either poor knowledge or were unaware of the importance of pre-marital screening of SCD [11]. Overall, the insufficient knowledge and/or misperception of SCD is reported in several studies conducted in SSA [4,7,[10][11][12]15], the region with the highest prevalence in the world. In the DRC, it is necessary that this disease be more popularized in the population and taught in both secondary and university schools as a cross-sectional course.…”

“…An effective fight against SCD requires not only a multidisciplinary approach (health personnel, pharmacists, geneticists, psychologists and anthropologists) but also the involvement of the population, an essential partner in the fight. Indeed, ignorance and misperceptions of the population on SCD have been reported as barriers to sickle cell care [7]. They may even influence the acceptability and practice of pre-marital screening for this disease [4].…”

“…Although the world health organization (WHO) recommends education of the population as a way to reduce mortality from SCD [2], the disease remains little known or unknown by people in sub-Saharan African countries most affected. Indeed, several studies conducted in sub-Saharan Africa on the population's knowledge of SCD had generally reported insufficient or erroneous knowledge of this disease [3][4][5][6][7]. As a result, myths about SCD, frustration, stigmatization and inappropriate treatment persist [4,5,8].…”

“…[9] However, studies concerning the population's knowledge on SCD are scarce. Nevertheless, some studies in the DRC focusing on knowledge of SCD were carried out in family members of sickle cell patients [7,8]. Thus, it seems appropriate to conduct a survey on the level of knowledge of SCD among educated population such as students.…”

Improvement of Sickle Cell Disease Morbi-Mortality in Children: Experience Gained in a Remote Area of an African Country

“…As reported by the Human Development Index, the majority of patients affected by SCD are those with a limited income [38] and in most African countries, only rich patients can have access to basic treatments, such as prophylactic oral penicillin, i.e. in DRC, the cost of SCD management is not affordable for approximately 95% of patients [37,39].…”