Experience and Perception of Patients and Healthcare Professionals on Acute Leukemia in Rwanda: A Qualitative Study

Figures & data

Table 1 Characteristics of Research Participants

Category of Participants	Number of Participants
Patients	4
Patients’ guardians	8
Oncologists	2
Hemato-oncologist	1
Hemato-pathologist	1
General pathologists	6
Physicians	17
Healthcare administrators	2
Total	41

Table 2 Themes and Sub-Themes in the Interviews of Patients/Guardians, Health Professionals, and Health Administrators on the Management of Acute Leukemia in Rwanda

Theme	Sub-Theme	Examples/Causes
Barriers to healthcare-seeking behaviors	Low awareness	Consultation of traditional healers; underestimation of the disease; stigmatization of families with acute leukemia patients; fear of a bad diagnosis.
	Financial accessibility	No health insurance, or co-payment fee.
Healthcare services: quality and contribution to the turn-around time from the first consultation to the beginning of therapy	Poor knowledge of some professionals	Acute leukemia was misdiagnosed as infection and eventually mismanaged.
	Delay to diagnosis	Shortage of specialized health professionals and equipment; recurrent stock-out of consumables.
	Suboptimal disease characterization	Lack of advanced methods for acute leukemia subtyping, such as flow cytometry and genomic landscaping services.
	Lack of some therapeutic services	Lack of targeted therapy, immunotherapy, bone marrow transplantation for ALL; lack of any curative-intent therapy for AML.
	Financial and geographic accessibility	Patients unable to pay for services not covered by health insurance (such as deposit fee, consumables not available in the public health facility, transport for the periodic appointments at oncology facility).
Healthcare system administration	Tedious referral system	Some healthcare professionals are reluctant to refer patients to a higher-level health facility.
		Patients have to go through the full referral system, which is tedious and time consuming.
	Scarcity of guidelines	No protocols for early detection and management of cancer from basic health facilities.
	Lack of training	Healthcare professionals at basic health facilities have little knowledge of acute leukemia.
	Prioritization	Acute leukemia is not included in the priority cancers to be addressed at the national level.

Abbreviations: ALL, acute lymphoblastic leukemia; AML, acute myeloid leukemia.

Figure 1 An example of an ALL patient’s journey, from the onset of symptoms to the initiation to chemotherapy.

Abbreviations: BCCOE, Butaro cancer center of excellence; BMA/B, bone marrow aspiration and biopsy; IV, intravenous.

Figure 2 Proposed roadmap for management of a patient with suspected acute leukemia, from onset of symptoms to the initiation of chemotherapy.

Abbreviations: BMA/B, bone marrow aspiration and biopsy; CHWs, community health workers; FBC, full blood count; PBF, peripheral blood film.