Background: Cerebrospinal meningitis (CSM) is a major public health threat in Nigeria. While acute mortality is well-documented, the burden of long-term sequelae remains unknown—CSM sequelae surveillance is not fully integrated into national systems, challenging coordinated aftercare and sustained tracking of patient outcomes after discharge. Nigeria is part of the meningitis belt. The 2024/25 CSM outbreak recorded >4,500 suspected cases, over 300 deaths, yet no systematic post-outbreak mechanism tracked survivors for aftereffects. The WHO estimates 1 in 5 survivors of bacterial meningitis live with lifelong disabilities, including hearing loss, cognitive difficulties, and physical disabilities. We describe Nigeria’s multi-method journey to identify and quantify the burden of CSM sequelae, while advancing policy change and building system readiness.
Methods: We tested three approaches: (1) cross-sectional survey of 176 students and 40 caregivers at a special needs school in Nasarawa State; (2) active follow-up of 8 confirmed CSM cases through NCDC surveillance systems by NCDC surveillance officer and community workers in Jigawa and Yobe States, leveraging the Enhanced CSM Surveillance Project for Vaccine Efficiency; (3) secondary analysis of 29 suspected CSM cases with sequelae from Zamfara State. Separately, we advocated for and achieved integration of sequelae surveillance into Nigeria’s 2024 National Emergency Preparedness and Response (EPR) Guidelines and developed sequelae questions (tracking mechanisms, referral systems, follow-up, diagnostics) for CSM Preparedness and Risk Assessment Readiness Tool.
Preliminary Results: Passive surveillance detected zero sequelae cases. Active methods revealed substantial signals: In Nasarawa: 45% attributed disability to prior health condition akin to infection / convulsion / fever – a signal; 1 caregiver mentioned meningitis as the cause for their child’s disability. In Jigawa and Yobe; all 8 actively followed confirmed cases developed sequelae (hearing loss, limb weakness, amputation), with 5 known serotypes (NmC, NmW). In Zamfara, all 29 suspected cases developed sequelae (epilepsy, cerebral palsy, intellectual disability, hearing impairment), yet zero were reported to national surveillance.
Conclusion: Passive surveillance fails to detect CSM sequelae. Active, multi-method approaches reveal a substantial hidden burden. To strengthen detection, Nigeria has made notable advancement by incorporating sequelae surveillance into national policy and readiness. The next priority is operationalization—translating policy into practice.