A Methodological Review of Patient Healthcare-Seeking Journeys from Symptom Onset to Receipt of Care

Background: For many diseases, early diagnosis and treatment are more cost-effective, reduce community spread of infectious diseases, and result in better patient outcomes. However, healthcare-seeking and diagnoses for several diseases are unnecessarily delayed. For example, in 2022, 3 million and 5.6 million people living with TB and HIV respectively were undiagnosed. Many patients never access appropriate testing, remain undiagnosed after testing or drop out shortly after treatment initiation. This underscores challenges in accessing healthcare for many individuals. Understanding healthcare-seeking obstacles can expose bottlenecks in healthcare delivery and promote equity of access. We aimed to synthesize methodologies used to portray healthcare-seeking trajectories and provide a conceptual framework for patient journey analyses. Design/Methods: We conducted a literature search using keywords related to patient/care healthcare-seeking/journey/pathway analysis AND TB OR infectious/pulmonary diseases in PubMED, CINAHL, Web of Science and Global Health (OVID). From a preliminary scoping search and expert consultation, we developed a conceptual framework and honed the key data points necessary to understand patients healthcare-seeking journeys, which then served as our inclusion criteria for the subsequent expanded review. Retained papers included at least three of these data points. Results: Our conceptual framework included 5 data points and 7 related indicators that contribute to understanding patients experiences during healthcare-seeking. We retained 66 studies that met our eligibility criteria. Most studies (56.3%) were in Central and Southeast Asia, explored TB healthcare-seeking experiences (76.6%), were quantitative (67.2%), used in-depth, semi-structured, or structured questionnaires for data collection (73.4%). Healthcare-seeking journeys were explored, measured and portrayed in different ways, with no consistency in included information. Conclusions: We synthesized various methodologies in exploring patient healthcare-seeking journeys and found crucial data points necessary to understand challenges patients encounter when interacting with health systems. and offer insights to researchers and healthcare practitioners. Our framework proposes a standardized approach to patient journey research.