Perceptions of tuberculosis patients about their physical, mental and social well-being: a field report from south India

Tuberculosis (TB) often leaves its impact physically, socially and mentally on patients. The goal of current tuberculosis services is microbiological cure of tuberculosis. Understanding patients' perceptions about TB will enable better design of a client-oriented comprehensive programme for tuberculosis. We interviewed patients registered for treatment during July-December 2000 in government health facilities of two tuberculosis units of south India. Data on perceptions of their illness before the onset of illness and during the treatment period were collected, using a modified SF36 questionnaire. Health status was measured for the following: physical functioning, social role limitations due to physical and emotional problems (stigma), mental health, energy vitality, pain and general health perceptions. Of 980 patients registered, 610 (206 females) cured or treatment completed patients were interviewed at two time points. The reaction of patients to the disclosure of the diagnosis was worry (50%) and suicidal thoughts (9%). 'Good health status' was perceived initially in less than 7% of patients, and compared to the status at the onset of illness, there was significant improvement after treatment (more than 78% trend chi square p<0.05). Despite microbiological cure, 47% of patients continued to have respiratory symptoms; this was significantly higher among patients who had delayed taking action for more than 3 months. Only 54% of patients perceived 'happy mental status' at the end of treatment, and there was no change in social stigma in both men and women. Tuberculosis control programmes should address issues such as continued respiratory symptoms, persistence of stigma, and poor emotional quality of life of patients with tuberculosis, even after they are cured. As well, providing social support for the needy, timely counseling and health education of patients, which will alleviate mental and social sufferings of patients, should be considered.