Tuberculous meningitis patient pathways and delays to diagnosis in Indonesia: a retrospective cohort study

Delays in diagnosis and treatment contribute to high mortality of tuberculous meningitis (TBM). We studied TBM patient pathways including delays to diagnosis, and their alignment with available diagnostic services in Indonesia.

We recruited patients admitted to two tertiary hospitals who started TBM treatment. Participants or their relatives were interviewed to recall healthcare visits preceding TBM treatment. We also surveyed available diagnostic capacity for TBM at hospitals that had been visited by at least two patients preceding their study enrolment.

Of 175 participants (median age 31 years, 57.1% men), 85.1% had reduced consciousness or coma, and 46.9% had motor deficits including hemiparesis. Patients attended a first healthcare provider, most often private clinics (38.3%) or informal healthcare providers (22.3%), at a median 14 days (IQR 1-34) after symptom onset. They visited multiple providers (median 5, IQR 3-8) over a prolonged time period (median 31 days, IQR 10-79) preceding TBM diagnosis. Of 40 surveyed hospitals, 52.5% could not or not always perform lumbar puncture, 22.5% lacked cerebral imaging facilities and 31.6% and 84.2%, respectively, could not provide routine microscopy or GeneXpert MTB/RIF on cerebrospinal fluid.

In these urban settings in Indonesia, pathways to TBM diagnosis are complex and lengthy, and patients often visit healthcare providers with limited capacity to diagnose TBM. There is an urgent need for interventions to strengthen health literacy and diagnostic and referral processes in public and private health sectors for complex patient groups like TBM.