The rainy season is now a memory of the past and the sun is shining in Manhiça, a rural area located 84 kilometers north of Maputo, the capital of Mozambique. At the entrance of the Manhiça Health Research Center There is laughter and morning chat as the team finalizes the details before beginning another day of fighting one of the oldest enemies: tuberculosis.
Tárcia Karina Sabão, Sphiwa Jeco, Luciano Alfredo Adolfo, Cacilda Muianga, Dinis Nguenha, Adélia Dolhana, Patrícia Manjate, Marta Cossa, Alberto Junior Bila, Sozinho Acácio and Alberto García-Basteiro make up the project’s health staff PreFIT (Predict the Future: Incipient Tuberculosis), a study funded by the Clinical Trials Association of Europe and Developing Countries that aims to provide affordable solutions to scale up preventive treatment in Africa and beyond. The ultimate goal is to stop this ancient disease, responsible for 1.3 million deaths in 2022 alone, mostly people from disadvantaged economic backgrounds. While the long-awaited vaccine arrives, which is on the way, tuberculosis prevention is key to eliminating the disease.
Approximately 25% of the world’s population is infected by Mycobacterium tuberculosis. Although these people cannot transmit the disease, there is a chance that they could one day develop the active, transmissible form of tuberculosis. And there are not enough resources to provide preventive treatment to all exposed people, so it is crucial to know who would benefit most from receiving it, in order to break the chain of transmission and reduce the burden of this disease. If it achieves its objectives, PreFIT will radically change the way this condition is prevented and treated.
We have to convince people who are not sick to participate in the study. It is easy at first because they see their relatives sick and want to help, but when they start to feel better, they no longer see the need to return.
Dinis Nguenha, principal researcher at the Manhiça center
The project focuses on household contacts—those people exposed to tuberculosis but who do not have the disease—in Mozambique, Uganda and South Africa, three countries with a high burden of the disease. The study aims to identify, among the billions of people in the world who have been exposed to tuberculosis, the small proportion of them who have developed active tuberculosis.
The project ended its recruitment process in January. In Mozambique alone, 1,106 household contacts of 450 cases were identified. It was not an easy task. As Dr. Dinis Nguenha, principal investigator at the Manhiça center, explains: “We have to convince people who are not sick to participate in the study. It is easy at the beginning of the project because they see their sick relatives and want to help, but when the sick person begins to feel better, they no longer see the need to return.”
Follow-up visits at six and 12 months are essential to the success of this study. Without them there is no way to know who is most likely to progress to the active phase of the disease. It is at this moment when the work of Karina Sabão, Sphiwa Jeco, Luciano Alfredo Adolfo and Adélia Dolhana becomes essential. With 32% of participants not showing up for the last visit to date, Mozambique so far has the lowest retention rate of the three African countries where this project takes place. But there is a whole story that these figures cannot tell.
Every morning, the PreFIT team, which is part of the Manhiça Tuberculosis Initiative, is divided into two: one group does the sixth month follow-up visit and another the twelfth month. Household contacts are typically picked up at home, taken to the hospital for testing, and then transported back to their homes. But, when the team arrives, they may discover that there is no one waiting for them.
The change of address and unemployment that pushes people to find better opportunities in neighboring and more affluent South Africa are some of the reasons that Dr. Dinis Nguenha mentions when explaining why domestic contacts do not attend scheduled visits. Karina Sabão, one of the nurses working in the study, adds: “There are companies that make it very difficult to go to the hospital if you are not really sick, even if we provide proof of the visit. Normally, PreFIT patients are not sick, they are healthy people living with tuberculosis and the bosses do not allow them to go out to visit. “Sometimes we have to organize visits during the weekend.”
In the sixth month, another challenge is imposed: the blood test. While only two tubes are needed for routine visits, PreFIT needs to collect up to nine to carry out all tests, raising concerns among local people. Rumors say that doctors trick people into “donating” blood that will then be sold on the European market. To fight misinformation, the team explains in detail how the collection works: “I use a five-liter bottle that I fill with water and indicate how much blood a human being has in their body. Then I explain the amount we have chosen. There may be many tubes, but the amount of blood is small. We are talking about 20 milliliters, insufficient for a blood donation, which requires nine milliliters per kilo, approximately 450 milliliters for a 50 kilo person,” says Nguenha.
Karina Sabão and Adélia Dolhana, the health workers assigned to the sixth month visits, go one
step further. Armed with patience and empathy, they go to the homes of people who have not yet attended their visits to understand what is preventing them and if it is possible to find a solution. In a country where only 36% of its population has access to a health center less than 30 minutes from their home, the trip is not easy: it requires driving through an intricate labyrinth of roads full of potholes and sand that only someone who knows the area thoroughly can navigate without getting lost. During the rainy season, from January to March, those roads become especially difficult.
You can’t look at a person who tells you ‘no’ as if they were someone you care less about. You have to understand her version. They don’t understand medicine. Your job as a nurse is to explain it to them.
Tárcia Karina Sabão, nurse in the PreFIT project
House to house, Sabão and Dolhana talk to patients and their closest contacts, asking them about their day and their well-being and giving them health recommendations – even if they are not related to tuberculosis -, reminding them of the importance of attending visits, trying to find out if there is any reason why they do not want to go to the hospital. When necessary, Dolhana, born and raised in Manhiça, speaks in Changana – one of Mozambique’s indigenous Bantu languages – to ensure she is understood. If they give their consent, health workers perform basic medical checks, such as hemoglobin tests, to check the patients’ general health status.
When asked about the qualities necessary to do his job well, Sabão does not hesitate for a second to answer: “Patience and empathy. You can’t look at a person who tells you ‘no’ as if they were someone you care less about. That is not true. You have to understand his version. They don’t understand medicine. Your job as a nurse is to explain it to them.”
He continues telling stories from the last few months: A man who lost his wife to tuberculosis and, traumatized, did not see the point in attending follow-up visits. A child scared about taking the test. A man who thought the hospital was selling his phone number to other researchers. A woman worried about the amount of blood that was going to be drawn.
Sabão takes each story seriously. “I don’t speak much Changana, but I try to be close to them, make them feel comfortable. If they tell you something, you have to listen to them until they finish. Then you give your opinion. Sometimes they want to tell you something, but you just want them to understand your side. They also have things to say.”
Kindness, patience, and empathy during these visits help increase the chances that people will remain committed to the project until the last visit, when Sphiwa Jeco and Luciano Alfredo Adolfo guide patients through the final step, an x-ray. This part is relatively simpler. The test is less invasive than blood testing and patients are more willing to come.
Once the results are obtained, Dinis Nguenha will explain them carefully and do a final health check, no matter if it is a symptom of tuberculosis or if the patient has a leg pain. Every sign of discomfort is taken with the utmost care. “True healthcare goes beyond treating ailments; It encompasses the holistic well-being of the individual, recognizing that each patient is a unique story that deserves compassionate attention and comprehensive care,” she adds.
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