Diagnostic pathways and barriers in multiple sclerosis in Zambia: A qualitative study

Abstract

Background: Multiple sclerosis remains under-recognized in Zambia and much of sub-Saharan Africa, often leading to misdiagnosis and delays. Understanding diagnostic pathways and barriers can inform strategies to improve multiple sclerosis recognition and care. Objectives: This study explores the diagnostic journeys of adults with multiple sclerosis in Zambia, emphasizing the challenges encountered at each stage. Methods: We conducted a qualitative study using semi-structured interviews with adults diagnosed with multiple sclerosis in Zambia. Thematic analysis identified patterns in diagnostic experiences, enabling the mapping of common pathways and barriers, along with patient perspectives on the impact of diagnostic delays. Results: Thirteen individuals with relapsing-remitting multiple sclerosis (mean age 34 ± 11 years; 70% female) were enrolled. Diagnostic pathways involved multiple healthcare visits, frequent misdiagnoses, and substantial delays. Key barriers included limited magnetic resonance imaging access, low multiple sclerosis awareness, and financial constraints. Thematic findings highlighted misinterpretation of symptoms, lack of specialists, and systemic health system limitations. Delayed diagnosis had a significantly negative impact on patients' lives. Conclusion: Multiple sclerosis diagnosis in Zambia is markedly delayed, adversely affecting patients. Greater awareness and policy reforms targeting diagnostic barriers are needed to promote earlier diagnosis and improve outcomes in Zambia and similar resource-limited settings.