PATIENCE AND EMPATHY TO PREDICT TUBERCULOSIS IN MOZAMBIQUE*

The PreFIT project team in Mozambique visits people at risk of developing the disease to prevent it. Listening and kindness are crucial tools to achieve their collaboration.

*The article was originally published in Planeta Futuro, El Pais. You can read the original here

Some of the health personnel from the PreFIT study in Mozambique posed in April in Manhiça making the anti-Tuberculosis gesture. From left to right, Luciano Alfredo Adolfo, Sphiwa Jeco, Adélia Dolhana, Dinis Nguenha, Tárcia Karina Sabão y Cacilda Muianga.

ALESSANDRA GUIDA

Manhiça (Mozambique) - 05 JUN 2024 - 05:35 CESTThe rainy season is now a memory of the past and the sun is shining in Manhiça, a rural area 84 kilometers north of Maputo, the capital of Mozambique. At the entrance to the Centro de Investigação em Saúde de Manhiça, laughter and morning chatter can be heard 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 Garcia-Basteiro make up the health staff of the PreFIT project (Predict the Future: Incipient Tuberculosis), a study funded by the European and Developing Countries Clinical Trials Partnership that aims to bring 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 economically disadvantaged backgrounds. While the long-awaited vaccine is on its way, TB prevention is key to eliminating the disease.

Approximately 25% of the world's population is infected with Mycobacterium Tuberculosis. Although these people cannot transmit the disease, there is a possibility that they could one day develop the active, transmissible form of Tuberculosis. And there are insufficient 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 successful, PreFIT will radically change the way TB is prevented and treated.

“We have to convince people who are not sick to participate in the study. It is easy at the beginning because they see their sick relatives and want to help, but when they start to feel better, they no longer see the need to come back”, Dinis Nguenha, principal investigator at the Manhiça center.

The project focuses on household contacts - those exposed to TB but who do not have the disease - in Mozambique, Uganda and South Africa, three high-burden countries. The study aims to identify, from among the billions of people in the world who have been exposed to TB, the small proportion of them who have developed active TB.

The project completed its recruitment process in January. In Mozambique alone, 1,106 household contacts from 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 starts to feel better, they no longer see the need to come back.”

Follow-up visits at six and 12 months are essential to the success of this study. Without them, there is no way of knowing who is most likely to move on to the active phase of the disease. It is at this point that the work of Karina Sabão, Sphiwa Jeco, Luciano Alfredo Adolfo and Adélia Dolhana is essential. With 32% of participants who have so far failed to show up for the last visit, Mozambique so far has the lowest retention rate of the three African countries where this project is being carried out. But there is a whole story that these figures cannot tell.

Adélia Dolhana and Tárcia Karina Sabão, standing, during a home visit in April in Manhiça. The woman was the only person present at home of the three contacts they were looking for. Her daughter was at school, and the other patient was at church.

Each morning, the Mozambican PreFIT team, which is part of the Manhiça TB Initiative, splits into two: one group does the sixth-month follow-up visit and the other the twelfth-month follow-up visit. Household contacts are usually picked up at home, taken to the hospital for testing and then transported back to their homes. But, when the team arrives, they may find that no one is 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 mentioned by Dr. Dinis Nguenha when explaining why domestic contacts do not come to scheduled visits. Karina Sabão, one of the nurses working on the study, adds: “There are companies that make it very difficult to go to the hospital if you are not really sick, even if you give 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 for a visit. Sometimes we have to arrange weekend visits.”

In the sixth month, there is another challenge: blood testing. While only two tubes are needed for routine visits, PreFIT needs to collect up to nine to carry out all the tests, which raises concerns among the local population. Rumors say that doctors trick people into “donating” blood that will then be sold on the European market. To combat 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 his or her body. Then I explain the amount we have chosen. The tubes can be many, but the amount of blood is small. We are talking about 20 milliliters, which is not enough for a blood donation, which needs nine milliliters per kilogram, approximately 450 milliliters for a 50-kilogram person,” says Nguenha.

Dr. Dinis Nguenha analyzing the results of an X-ray performed during a visit to a patient in April in Manhiça.

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 attendedtheir visits to understand what is preventing them and whether it is possible to find a solution. In a country where only 36% of its population has access to a health center within 30 minutes of home, the journey is not easy: it requires driving through an intricate maze of bumpy, sandy roads that only someone who knows the area inside out 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 says 'no' to you as if they are someone you care less about. You have to understand their side. 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 unrelated to TB - reminding them of the importance of coming for visits, trying to find out if there is any reason they don't want to go to the hospital. When necessary, Dolhana, who was born and raised in Manhiça, speaks in Changana - one of Mozambique's indigenous Bantu languages - to make sure she is understood. If they give their consent, the health workers perform basic medical check-ups, such as hemoglobin tests, to check patients' general health.

When asked about the qualities needed to do her job well, Sabão doesn't hesitate for a second to answer: “Patience and empathy. You can't look at a person who says 'no' to you as if they are someone you care less about. That's not true. You have to understand their side. They don't understand medicine. Your job as a nurse is to explain it to them.”

Tárcia Karina Sabão was doing a hemoglobin test during a home visit in April in Manhiça.

She goes on to relate stories from the past few months: A man who lost his wife to Tuberculosis and, traumatized, saw no point in going for follow-up visits. A child afraid to get tested. A man who thought the hospital was selling his phone number to other researchers. A woman worried about the amount of blood she was going to have drawn.

Sabão takes every story seriously. “I don't talk a lot of changana, but I try to be close to them, make them feel at ease. 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 have things to say, too.

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 last step, an X-ray. This part is relatively easier. The test is less invasive than the blood test 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's leg hurts. Every sign of discomfort is taken with the utmost care. “True healthcare goes beyond treating ailments; it embraces the holistic well-being of the individual, recognizing that each patient is a unique story that deserves compassionate attention and holistic care,” he adds.