Objective: We aimed to investigate the awareness, health care seeking behavior, and diagnostic delay in extrapulmonary tuberculosis (EPTB) in a resource-constrained setting from Central India.
Setting and method: Questionnaire based interview of 1220 EPTB patients ≥14 years of age was conducted between July 2004 and August 2012 at Ujjain charitable Hospital, Ujjain, India.
Results: Only 15% of patients had ever heard about EPTB and 2-4% knew about its prevention or treatment. Only 12% patients first sought medical advice while 49% patients practiced self-medication, 28% consulted traditional healers and 11% drug store/pharmacy. The median patient delay was 8 weeks (4.6-21.4 weeks). Majority (78%) of patients visited ≥3 health centers. Thirty-eight percent patients first visited any government health facility. Majority (97%) who first visited district and primary public health center were referred to private sector for investigations and 82% patients changed the consultation to private doctor after initial visit to public hospital. The median health system delay was 7 weeks (0.6-16.4 weeks).
Conclusion: Patients had very poor awareness of EPTB. Patients were referred from public to private sector in search of diagnostic facilities. Improvement of public awareness about EPTB and better public-private partnership may contribute towards reduction in diagnostic delay.