Documentation of patients and health care professionals' experiences and perceptions regarding management of acute leukemia in Rwanda : current situation

Abstract

Background: Acute myeloid leukemia (AML) and acute lymphoblastic leukemia (ALL) are hematological malignancies characterized by clonal expansion of myeloid (AML) or lymphoid (ALL) blasts in the bone marrow, blood or other tissue. Epidemiological information of acute leukemia (ALL and AML) in Sub-Saharan Africa is scarce; available information is usually based on extrapolated data from other regions. The number of reported cases of ALL and AML in Rwanda is even lower than expected, when comparing with the extrapolated data for Rwanda. This low reporting rate may be due to factors specific to the patients or their families, to the health system itself and/or healthcare professionals and infrastructure. The aim of this study was to explore challenges associated with the timely diagnosis, therapy and good prognosis of acute leukemia in Rwanda. Methods: This is a qualitative study using phenomenological approach. It involved 41 participants including patients, patients’ guardians and key informants, that is, physicians from district hospitals and specialists in different fields from referral hospitals, as well as directors from Rwanda Biomedical centres (RBC). In-depth interview was done; we used thematic analysis to analyse the data. Ethical clearance was obtained before starting the data collection. Results: The identified barriers to healthcare seeking behaviors, on the side of patients and their families, are poor knowledge usually causing them to consult traditional healers, financial constraints such as covering co-payment fees and transport costs to the diagnosis and treatment sites. Moreover, there is a tedious referral system that can lead to the loss of some patients before diagnosis. Furthermore, healthcare professionals in referral hospitals ascertain to receive most of patients at end stage. The existing diagnostic facilities are not used in a way that speeds up the diagnosis. ALL therapy in Rwanda uses only chemotherapy; bone marrow (BM) transplantation is not available. Palliation is the only available option for AML treatment in Rwanda. Conclusion: ALL and AML exist in Rwanda, though under-reported. This underreporting is due to patients’ factors, tedious referral system and sub-optimal existing diagnostic capacities. This affects negatively the outcome. All these, together with the existing therapeutic options, need to be improved.