Enhancing data collection on socio-behavioral exposure pathways for emerging tickborne disease through engagement with surviving cases and their household members.

BackgroundSevere fever with thrombocytopenia syndrome (SFTS) is an epidemiologically complex tickborne zoonosis emerging across Asia. More comprehensive, contextually relevant data is needed for this low incidence, high-severity disease.MethodsA mixed-methods formative research study was undertaken in Nagasaki, Japan between August-October 2025, to pilot a newly developed questionnaire on SFTS exposure pathways with 22 surviving cases and their household members. Participants completed the questionnaire twice, one month apart, to evaluate questionnaire reliability in a study population advanced in age and affected by post-SFTS sequelae. Twenty semi-structured interviews were conducted.ResultsParticipants reliably answered closed-ended questions about potential SFTS virus exposure events, with a median 88.5% intra-participant consistency. Follow-up questions about timing or duration of exposures had lower completeness and consistency. During feedback interviews, participants reported lived experience with multi-step infection pathways that validated inclusion of questionnaire sections on vector-, animal-, environment-, and human- mediated pathways. Participants also revealed complex illness perceptions-shaped by self-reflection, cultural norms, and expert influences-that affected response behavior.ConclusionsThe questionnaire was updated based on participant insights and is available for future adaptation and use by SFTS researchers. Ongoing research engagement with SFTS-affected communities will enhance relevance and usefulness of larger-scale data collection efforts.