Elspeth Kendall-Carpenter is a New Zealand nurse who recently returned from Nukus, Uzbekistan, where Médecins Sans Frontières (MSF) runs a pioneering clinical trial with the aim to radically improve treatment for drug-resistant tuberculosis (DR-TB). Elspeth provides a first-hand account of her time as Nursing Activity Manager, highlighting the essential role nurses play in delivering tuberculosis care.
Why did MSF start the TB PRACTECAL trial in Nukus?
When you see what people have to go through each day taking their DR-TB medications, it’s easy to understand why there are so many treatment failures. Current standard DR-TB treatment requires patients to take daily drugs for two years or more, during which time they must take more than 10,000 pills and have painful injections each day for at least eight months. Side effects from treatment may include nausea, joint pain, psychosis and permanent deafness, symptoms which can be seriously debilitating for many people.
In Nukus, where MSF has one of our longest running DR-TB programs, we launched the TB PRACTECAL trial in 2017 with the aim to find a more effective treatment regimen, taken over a shorter period, requiring fewer pills and no injections, with less side effects and offering improved quality of life.
“Nurses form the backbone of this trial. Without nurses, patients go adrift, without patients, there are no outcomes for analysis and therefore there would be no trial.”
How does the trial work?
TB PRACTECAL is a multi-site clinical trial, with other locations in South Africa and Belarus. In Nukus, the trial began by targeting multi drug-resistant TB (MDR-TB) and extensively drug-resistant TB (XDR-TB) patients over 18 years old, prescribing a six-month combination of newly available and current TB drugs versus the standard of care treatment. Patients are observed taking their TB drugs daily for six months, and then have regular follow-up appointments over a subsequent two-year period, during which their clinical response to treatment is monitored.
Your position was Nursing Activity Manager. What did this involve?
Nurses form the backbone of this trial. Without nurses, patients go adrift – without patients, there are no outcomes for analysis and therefore there would be no trial. My role was to work alongside the National Nurse Supervisor to coordinate all nursing activities for pre- and post-recruitment of patients.
Clinical trials follow international ethical and scientific quality standards that ensure the rights, integrity and confidentiality of all trial patients are protected. Part of our work involved training and supervising the nurses responsible for maintaining patient safety and ensuring that all activities were accompanied by high quality documentation. We needed to keep our team informed constantly of any policy or practice changes. We worked closely with the pharmacy, lab, data, mental health and medical teams.
“The nursing team is the main link with patients, having daily contact with them, guiding them, encouraging them, listening to them. We support patients with their adherence, their challenges and their doubts.”
Why is long-term nursing support so essential for TB?
TB management is not just about diagnosis and prescribing; most patients benefit from community nursing team support throughout their painful, and at times toxic, treatment. The nursing team is the main link with patients, having daily contact with them in the community or on the ward, guiding them, encouraging them and listening to them. We support patients with their adherence to treatment, their challenges and their doubts. The quality of nursing care can often mean the difference between a patient succeeding or failing treatment.
What was most challenging about being involved in the project?
Every day had its unexpected challenges, making it a rollercoaster ride: demanding, exhilarating, exhausting, yet still satisfying. We spent a long time doing the ground work (the paperwork) in preparation for starting TB PRACTECAL, but we later referred to that time as “TB Theoretical”, as so many things changed once we started recruiting patients. The stigma of TB was also an ongoing challenge in encouraging people with TB to come for treatment.
What was most rewarding?
Watching the Nukus nursing team grow in skill, self-belief, motivation, enthusiasm, coordination, responsibility and confidence was hugely rewarding. They were an amazing team to work with and I hope they will expand their experience in other health roles within Uzbekistan in the future.
"Watching the Nukus nursing team grow in skill, self-belief, motivation, enthusiasm, coordination, responsibility and confidence was hugely rewarding"
Anything else you would like to add?
Many people are surprised that TB is still a problem in the world, thinking it was cured long ago. We need to do so much more to educate the world about the prevention and management of TB and to improve the care and support of TB patients and their communities.
Uzbekistan is among the top 30 countries with the highest rates of MDR-TB. In Karakalpakstan, Uzbekistan, MSF works with the national and regional health ministries to implement more patient-centred models of care. During 2017, 2,466 patients started TB treatment; of these, 1,710 were treated for drug-sensitive TB and 756 for drug-resistant strains, including 79 for extensively drug-resistant TB (XDR-TB). Of the 756 DR-TB patients, 130 were treated with new or repurposed drugs.