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WANTED! Leaders who will dare ask what tuberculosis patients really want

Ahead of  World Tuberculosis Day, Bern-Thomas Nyang’wa of Médecins Sans Frontières discusses the importance of considering patients’ preferences when evaluating new treatment regimens.

World Tuberculosis Day is commemorated on 24th of March and this year’s theme is “Wanted: leaders for a TB free world”. At the first WHO Global Ministerial Conference on Ending TB, held in Moscow in November, ministers recognised that tuberculosis (TB) causes more deaths than any other infectious disease and that the disease poses a serious threat to global security. These leaders signed on to the Moscow Declaration to End TB which among other commitments, acknowledged that without understanding the needs of affected individuals and communities, not much will be achieved in TB control.

While it’s safe to assume that patients would like to be cured of TB, they may not want to be cured at any cost. It is unclear if all patients are aware of and accept the 10% risk of going deaf from MDR-TB treatment. Family bread winners might not be willing to walk for an hour to go and get directly-observed therapy at the clinic and forgo the income their family depends on. For some, financially supporting their family may be more important than their own health.

It is only by asking patients what they want that we may understand the approaches that are most effective. For example, perhaps using video-observed therapy (VOT) is a preferable method to directly observed therapy (DOT) for supporting adherence. At a Médecins Sans Frontières (MSF) sponsored regional TB symposium in Bishkek, Kyrgyzstan, Ekaterina, a Human Resources specialist from Belarus, shared how asynchronous VOT allowed her to choose the ideal time to take her medications, which was late at night. By asking patients what attributes they consider important to future treatment regimens we can design clinical trials around their needs.

Drug registrations and clinical trials in other therapeutic areas include quality of life (QoL) measurements and other patient reported outcomes. These are often lacking from trials of TB regimens, even short courses ostensibly designed to address patients’ QoL. Results of all phase three novel TB regimen trials (OFLOTUB, ReMOX, RIFAQUIN, STREAM) have not been able to demonstrate non-inferiority of the investigational arms when compared to the standard of care. It is unclear if anyone asked patients how they felt while taking those shorter courses of treatment. We don’t know how a patient would weigh a potentially slightly higher risk of failure against the benefit of reduced treatment duration.

TB control undeniably needs Heads of States, Ministers of Finance and Health to lead the political fight at the highest policy level. The UN General Assembly High-level Meeting on Ending TB in September this year is therefore critical to this push. However, each one of us doctors, nurses, researchers and counsellors have individual responsibility to lead and dare ask the person with TB in front of us what they really want, and be prepared to adequately respond to it.

 

Bern-Thomas Nyang’wa

About the author: Bern-Thomas Nyang’wa of Médecins Sans Frontières is the Chief investigator and project manager for the TB-PRACTECAL- the multicentre clinical trial assessing short course MDR-TB regimens. Also an Honorary Clinical Lecturer at University College of London, Dr Nyang’wa has served in MSF-TB programmes since 2010; the same year he completed a Master of International Public Health at the University of Leeds. He had previously completed a Bachelor of Medicine and Bachelor of Surgery at the College of Medicine, University of Malawi.

Feature image credit: Day Donaldson, Flickr.

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