Conceptualising care pathways for neglected tropical diseases in sub-Saharan Africa: A systematic scoping review

BackgroundThere is a lack of synthesized evidence on how best to support care continuity for neglected tropical diseases (NTDs) in sub-Saharan Africa (SSA). MethodsTo identify all SSA NTD care pathways, we conducted a systematic search of six scientific databases from inception to 18 February 2023. All studies were required to include care pathways for NTDs, defined at minimum as having both NTD diagnosis and treatment or referral to treatment for care continuity. Using an iterative approach to establish an understanding of care pathways relevant for NTDs, concept development drew from data extraction of variables relating to study characteristics; approaches to diagnosis, treatment, and referrals as pathway components; barriers to care and strategies for their resolution; and ethical challenges. FindingsSearches returned 2178 studies where after de-duplication and eligibility screening, 164 were systematically reviewed. Medical referrals were used to support care continuity in 62.2% (102/164) of studies, and community health workers played roles in patient care in 22.6% (37/164) of studies. Only 6.7% (11/164) of studies explicitly mapped care pathways, none of which were for NTDs where preventive chemotherapy is the primary management strategy. The majority of studies (82.9%; 136/164) presented unmapped care pathways, which were primarily biomedical research studies that provided diagnosis and/or treatment of NTD patients (66.9%; 91/136). Of biomedical research studies, 36.3% (33/91) described strategies to support continuity of care. While there is no singular care pathway for all NTDs in SSA, we proposed a conceptual framework relevant for implementation of biomedical research. InterpretationFurther research is needed on morbidity management of NTDs typically addressed through mass drug administration in sub-Saharan Africa. To conduct this research, there is a need for guidance on how research sponsors should collaborate with local health systems to enable continuity of care in low-income, NTD-endemic settings. Key messagesO_ST_ABSWhat is already known on this topicC_ST_ABSProviding continuity of care for neglected tropical diseases (NTDs) in the low-income settings where NTDs are endemic is challenging due to a variety of factors, particularly for chronic NTDs requiring morbidity management. What this study addsAll NTDs require patient care, yet NTDs are unjustifiably divided into morbidity management NTDs and preventive chemotherapy NTDs. Further research on morbidity management is needed on NTDs typically managed through mass drug administration of preventive chemotherapies. We show that implementation of biomedical research on NTDs creates distinct care pathways that connect research participants with local health systems for continuity of care. These pathways provide a conceptual framework to understand care continuity during biomedical research as a practical ethical issue that merits further exploration, and illuminates how biomedical research studies might support care continuity for NTD patients such as through provision of transport, collaboration with community health workers, or structural support to local health system service providers. How this study might affect research, practice or policyThis research opens avenues to create tools to assist researchers in providing care in resource-constrained settings. Researchers should consider care pathways for NTDs as a tool to understand local contexts of health seeking and care delivery prior to research implementation. Through these pathways, researchers can understand potential gaps in care continuity during research implementation, and determine what support may be required to address these gaps and facilitate research activities in low-income settings.