As highlighted in a recent op-ed, the traditional goals of a tuberculosis (TB) program were to diagnose, treat and cure. If you asked TB professionals "so what happens next?" you'd just get a lot of head-scratching.
But tides are changing! Driven by clear demand from TB patients and survivors, the TB research community is starting to examine just what post TB life holds. Our recent paper, tries to answer a part of this question for TB patients treated in India. After our review of the available literature, we were concerned with the near-total lack of data on post TB outcomes among Indian TB patients, especially patients treated in India's large private healthcare sector.
With the help of World Health Partners, we called TB patients or their family members up to five years after they finished private-sector treatment in Patna, India to ask how patients were doing. Specifically, we were interested in establishing the rates of fatality and recurrent TB, the worst possible post TB outcomes.
First, we found that 7.3% of patients died during their anti-TB treatment: a rate above the World Health Organization's End TB Strategy's acceptable fatality rate. This could mean that patients were quite sick by the time they were able to get a diagnosis and start anti-TB treatment. It could also mean that patients received inadequate support to make sure they were able to take their daily medications during the long six to nine months of treatment. At two years after treatment completion, 3.3% of patients had died and another 3.6% had to start another round of TB treatment. This is quite a high rate of fatality and could indicate that even after being microbiologically cured of TB, patients are still pretty sick. The high rate of recurrence could mean that some patients weren't fully cured of their original TB infection or that because they were sent back into the same social conditions that lead to their first TB infection, they caught the disease again. Taken together, we believe these rates are unacceptable for the TB community and show that substantial research and programmatic attention needs to be aimed at supporting patients after they complete TB treatment.
We have a responsibility not just to cure patients with TB, but to ensure that they lead a long and healthy life after leaving our care. I'm heartened to see the TB research community begin to focus on this important area of TB quality-of-care. I encourage TB patient advocates to keep pushing us to address your concerns and together we'll build TB programs that meet the lifetime needs of TB patients.