Patient journeys for neglected tropical diseases in rural sub-Saharan Africa: a scoping review.

backgroundPatient journeys highlight evolving processes of care seeking from patient perspectives over the course of time and disease progression. Patient journeys for neglected tropical diseases (NTDs) in rural sub-Saharan Africa (SSA) are poorly understood. This review aims to identify studies including patient journeys for NTDs in rural SSA.

methodsSystematic search of six scientific databases from inception to 18 November 2024. All studies were required to include patient journeys for NTDs, defined as the continuous arc of the patient care seeking experience at multiple time points while navigating increasingly debilitating disease. All patient journeys were depicted explicitly using flow diagrams, lists of ordered journey components, or patient narratives. Variables extracted included the use and rationale of referrals, types of healthcare delivery providers engaged in the patient journey, and barriers and facilitators of care continuity. Journeys were analysed using framework synthesis.

resultsSearches returned 2605 studies where after de-duplication and eligibility screening, 22 studies were identified for inclusion Included studies represented eight NTDs, which were categorised into four groups: severe and stigmatising skin NTDs (SSSDs) (13/22) including Buruli ulcer, lymphatic filariasis, onchocerciasis, and yaws; human African trypanosomiasis (HAT) (3/22); snakebite and rabies (4/22); and schistosomiasis (intestinal and female genital) (2/22). NTD patient journeys revealed health system constraints relating to limited medical resources and ineffective referral pathways, social dimensions of gender and stigma hindering access to care, and logistical concerns related to distance to health facilities, and lack of transport. Patient journeys for different NTDs highlighted specific dimensions of this local context, including challenges with mental health distress for individuals living with SSSDs, difficulties obtaining diagnoses for HAT as an NTD with non-specific symptoms, and inaccessibility of treatment for schistosomiasis in the context of missed mass drug administration.

conclusionsNTD patient journeys show varied care seeking experiences within the broader context of neglect and health inequity that characterises settings where NTDs are endemic. For NTDs resulting in long-term or chronic conditions, these journeys highlight inaccessible care and a lack of integrated approaches for prevention, treatment, and management within health systems. By understanding patient journeys, NTD researchers and practitioners can determine how best to support NTD patients in navigating access to care.