The national tuberculosis patient database is being updated

One of the project activities is the updating of the national tuberculosis patient database which includes data on all patients, from diagnosis to follow-up, monitoring, assessment, treatment course, etc., say the specialists at the “Marius Nasta” Institute of Pulmonology. It is a sort of patient register, explains the Institute’s manager, dr. Gilda Popescu. “The database is useful for the medical system because we practically know exactly what happens with each patient who starts an anti-TB treatment and, year after year, we have information about that patient in the system. A patient is registered only once, but there are data about everything that happens to him or her – all the hospital admissions, everything,” she details.

This database is also filled out and updated with data on the patients with multidrug-resistant and extensively drug-resistant tuberculosis. The information is extremely useful, and very important reports may be drawn up based on it. “This is an upgrade of the existing database which was done by extending the information, including a development based on the modern diagnostic component, such as liquid media and molecular diagnostic, and the component related to therapies other than the standard therapy for sensitive tuberculosis. This database is also useful for international reporting,” dr. Victor Spînu added.

Moreover, specialists explain, in addition to diagnostic-related data, the database includes other patient information, such as the place of residence, age, developments in their condition, etc. Many things may be found if all this is analysed. For example, why there are more patients in a certain county, why certain patients do not heal, whether the situation is in any way related to age or social status, or whether it is related to another factor.

“The patient-physician relationship is the most important for treatment success”

The establishment of a trust relationship between the physician and the patient is extremely important, say the specialists in the TB hospitals and dispensaries, and another important aspect is the effective communication between the two,” psychologists who work with the patients diagnosed with tuberculosis emphasize. Every Thursday, at the “Marius Nasta” Institute of Pulmonology in Bucharest, psychologist Andreea Dumitrescu meets with the patients hospitalised in the ward where those with multidrug-resistant tuberculosis (MDR-TB) are treated.

“Blind man’s buff in pairs” – game and mirror

On Thursdays, before lunch, several pairs of footsteps can be heard getting out of the hospital rooms and gathering in the hallway on the first floor of the hospital wing, where the meeting usually takes place. When the patients do not have any specific questions or certain topics to propose for discussion, Andreea Dumitrescu comes up with exercises that may be useful for them. One of the exercises Andreea often proposes for these meetings is “Blind man’s buff in pairs,” the purpose of which is to increase trust in others. In Andreea’s approach, the exercise seeks to increase patients’ trust in the physician who treats them.

This time, ten patients are present at the meeting. A middle-aged man, a talkative young man, a shy girl, a jovial gentleman, an elegant-looking lady, some of them just walking around, other sitting thoughtfully on the chairs. Andreea’s voice brings them together. “First, we have some fun, then we talk.” The chairs are placed randomly along the corridor and the patients form pairs of two.

Some are hesitant, others can’t find a partner. Jokes are thrown around, to hide the unease, while Andreea reveals what they have to do: one of the two team members will be blindfolded, spun round a few times, then guided by his or her teammate through the “maze” of chairs to the other end. The basic rule: the blindfolded person must only be guided verbally. “You are not allowed to take them by the hand, pull them by the sleeve or push them from behind, nothing. The blindfolded person must be helped get out of the maze only by verbal indications. Right, left, one step forward and so on.” “I want to be blindfolded,” says Constantin, the talkative young man, throwing himself into the game. Very tall and slightly hunch-backed, with a punk cut that gives him a somewhat dangerous look, he soon goes from jokes to irritation, he speaks a lot and has trouble concentrating. He is not very popular. “Who wants to work with Constantin?” Andreea asks. After a couple of moments during which the others look away, Constantin designates Marin: “You.”

The path to healing

Andreea ties the scarf around Constantin’s eyes, she spins him round and explains again to Marin what he has to do. Everybody quiets down and Marin’s voice becomes clear. “One step forward. Stop! Right… left… more to the left… that’s it, that’s good. Now go straight ahead…” Constantin walks slower than ever, he keeps asking questions, he is anxious and irritated. He only relies on what he hears, and Marin’s indications are too rare. He spends too much time thinking. “Right, slowly, that’s it…, a little to the left…” And Constantin permanently prompts him: “Like this?”, “What now?”, “Say something!”, “Do I keep going?”. He takes bigger and bigger steps only to get it over with sooner. Two minutes have passed and he’s only halfway through the maze when he touches a chair with his foot. He turns into a little tornado and starts throwing the chairs around, he pulls out the scarf from around his eyes and grumbles at Marin: “I’ve already touched two chairs!” He has not made it through the maze. Now it’s his turn to guide Marin. Blindfolded, Marin barely nears a chair when Constantin drives him on: “Come on, come on, straight, straight, that’s it, come on!” He pulls him by the sleeve, “Come on, man!”, Andreea corrects him and he returns to the verbal guidance rule. “To this side, come on!”, he shows Marin, forgetting that Marin is blindfolded. “Over here, come on!” Everybody is laughing and Marin finishes in less than a minute, but he was guided with the hands too, not just verbally. The exercise ends with a patient being guided by Andreea herself, because the rest of the patients refuse to play. This is either because they have just taken their treatment and feel dizzy from the drugs, or because they are embarrassed and afraid not to make wrong moves through the maze of chairs. Florin was spun round and now is ready to listen. “Take one step forward. Stop. Take one step to the left. One step forward. Half a step to the right. Two steps forward.” After a minute and a half, Florin has made it through to the other side of the maze without having touched a chair. Guidance is essential, but observing the instructions is as well, and Florin did exactly as was told.

“Now, let’s talk. What did you think about all this?”, Andreea asks. The chairs are rearranged in a circle. “Children’s play,” someone says. Florin says something essential: “You let yourself be guided by someone you trust, about whom you know precisely that they would not guide you wrong.” Constantin gets the idea and immediately apologizes: “I got angry because… with all that right, left, right, left, I thought that he was not guiding me properly.” I was feeling disoriented because my team partner did not know how to guide me. He was saying ‘over here, over there’ but I could not orient myself after what he was saying,” another patient says.

Trust – the key element

What do they, the patients, think was the purpose of this exercise? Patience, self-control, orientation, some say. A lady who did not participate because the treatment she is under for MDR has affected her hearing and she must lip-read, says it was relaxing. From a corner, a gentleman, white-haired despite his age, only speaks out when asked: trust. A test for the trust in your team partner. The others seem to agree. Yes, this exercise showed them how important is the trust of the blindfolded in the partner who has more information than he or she does. Mr. Nicolescu adds: “How to make the other trust what you say, and, if you are the one who is guided, to know how to do what the other member of the team tells you to do”.

Andreea Dumitrescu encourages them to tell their opinions and then she clears things up: “If I told you that I did this exercise to illustrate the relationship you have with your physician throughout the treatment, what would you think? What if you were to think that, yes, that’s about how the relationship I have with my pulmonologist looks like and this is the route I have to take together with him or her?” Silence. Everybody retraces in their own mind the route through the maze and compares it with their situation as a patient. During the exercise, Constantin did not trust Marin, he got angry and abandoned the path through the maze. As a patient, he did not trust his physician and abandoned his treatment several times, which is why he went from sensitive TB to MDR. Marin instead observes the treatment and the physician’s indications totally, just as he observed the indications for going through the maze. Florin also complies with the treatment. The shy young woman, Marcela, declares that she has blind trust in her physician and that she sees him as her only chance to heal.

“The important thing is to get to the other end”

After they understood the purpose of the exercise very well, the patients must also understand what each of the two partners – patient and physician – must do for the treatment to end well and for the patient to heal. Because, as the psychologists working with the patients explained, each of the two persons involved has his or her share of responsibility.

Therefore, Andreea asks, what did they think was key in getting to the end of the road together? “The fact that you can trust someone, another person,” says Florin. “Overcoming obstacles,” says Mr. Nicolescu. Marcela follows strictly what her physician tells her and she noticed that this was visible in the results of her tests which have continued to improve. “It was worth the effort of staying here, in the hospital, for so long – I’ve completed five months this week…” “Yes,” Mr. Nicolescu agrees. “But you as a patient also must have a little will of your own to complete this treatment, to keep in mind the doctor’s recommendations. I, for example, have taken my treatment now and I feel, I don’t know… a little unwell. But this is the treatment. It’s not the first time I take it. I have taken another treatment scheme before, but I go on, I have to heal!”

Speaking from the patient’s side, they find it easy to analyse the situation. But what if they were in the shoes of the person who guided them, in the physician’s shoes? One moment of thinking and the answer comes shortly: the important thing is how they communicate, whether one is understood by the other. “The patient must trust the physician, and the physician must trust the patient,” Florin explains. “And the patients must trust themselves to complete the treatment. Walking around among the chairs, blindfolded, guided only by someone telling you what to do means having great trust in the person guiding you. They bumped into chairs now and then, so no matter how much trust you have, you will certainly run into some doubts along the way, doubts in yourself, in the one who guides you, there is hardship… And then the important thing is to get to the other end.”

Communication – the key to success

“But what do you think,” Andreea asks, “what would the physician need in order to guide the patient better?” “As far as the physician-patient relationship is concerned, I have seen that there is quite a lot of effort being spent for us. The physician understands us, you understand us and the others do as well, and I have a satisfaction… and I have trust, I really have trust,” says Marin.

“It’s as if you let your life in someone’s hands. That person with special training who can bring you to the shore. But you must trust that person, and that person must know how to collaborate with you. Because if you don’t trust…,” Ms. Petrescu adds.

In fact, the physician-patient relationship is the key element for treatment success. And for the physician-patient relationship to be satisfying, both must communicate effectively. “This guidance is like the path through life. If you make mistakes…,” Mr. Ilie leaves his sentence hanging. “Maybe a patient is a little thick-brained or something and then the physician must explain things two or three times. And, as a patient, to help the communication with the physician, to understand things better, you must know what to ask.” “Of course,” Mr. Nicolescu adds. “And if you want to get out of this well, you must comply with what your doctor tells you. If he or she tells you left and you go right, everything amounts to nothing.”

“So – Andreea Dumitrescu concludes –, the exercise was meant to show, on the one hand, that there is a relationship between you and the physician who takes care of you, and, on the other hand, that this relationship depends on how you communicate. The more you pay attention to what is indicated to you, the more chances you have to understand and, as a result, to comply with those indications. No matter how knowledgeable and skilful your physician is, the outcome of his or her work is also up to you, and up to the relationship you have with him or her. The relationship is one of collaboration, and you, the patient, have the highest interest. The physician has all the best intentions and it is very important to have a good relationship with your physician so that, together, you can complete the treatment and heal. In order for the physician to cure you, you yourself must be receptive, and for you to be receptive, the physician must communicate clearly, so that you to understand what you have to do. Ask questions! You have several months, from the time you are admitted, to ask everything that is unclear and everything you want to know.”

* The names of the patients have been changed, upon their request.

Cătălina Constantin: When they hear the diagnostic, the patients have a mental block and stop hearing the information. The information must be given in doses.

The Association for the Support of Patients with Multidrug-Resistant Tuberculosis (ASPTMR), in partnership with LHL International Tuberculosis Foundation, a patient organisation in Norway, performs within the project activities related to the training of medical practitioners and TB patient workers to help them develop very effective communication skills in a very short time, in five minutes.

Also, they built a network of peer supporters (most of them former TB patients who now help those who undergo treatment) for patients with multidrug-resistant tuberculosis, and also edited a brochure which will serve as the basic tool for the provision of information to TB patients. We have details about all these from Cătălina Constantin (photo), the ASPTMR chairwoman.

– How did you come up with the idea for these joint courses for specialists and patients?

– The medical environment of the TB facilities network has a certain background of beliefs and assumptions. To maximize the impact of the information, we placed these people in different situations. We did not organise courses for physicians and, separately, for nurses or other categories. Instead, we organised joint courses for physicians, nurses, former patients, psychologists… several types of specialists who work with TB patients. Being such a heterogenous group, regardless of the information and beliefs they came with, and because they were involved in interactive activities, they managed to understand the situation better form the others’ perspective as well. In this way, all participants were able to change their perspective. The physicians were able to better put themselves in the place of patients, and the patients in the place of physicians and so on. Because the main problem is that many times they do not communicate well. Medical practitioners expect patients to understand the information the first time they are told, and patients expect the physician to be somewhere on a pedestal and do not see him or her as a person capable of understanding, while social workers and psychologists are often seen as outsiders in the care setting and so on. When they were all brought together, they understood each other, they saw how the situation looks like when being in the other’s shoes and they managed to leave the training sessions with another perspective, which I hope helps them. I have met a great deal of people in the medical system who suffer from burnout, who, emotionally, are on the brink of failure and who feel overwhelmed by the fact that they also have to do things that are of no help to the patient, a lot of administrative paperwork… In these courses, we also teach them strategies for dealing with stress, one of them being to do mindfulness meditation to maintain their focus.

– What is the biggest problem that physicians point out to in the relationship with the patient and what is the biggest problem that patients point out to in the relationship with the physician? Do these two problems meet at any point?

– They certainly do meet. Physicians blame the lack of time, which I think is also caused by the fact that they are not sufficiently trained by the system that should have trained them with regard to time management, stress management, effective communication, conveying the message and delivering the information to the patient in doses. From the patients’ perspective, when they receive the tuberculosis diagnostic, they stop hearing pretty much everything else they are told. Then, there is the change that intervenes after they are discharged from hospital and start outpatient care; all of a sudden, patients feel removed from an environment where they felt safe. In the hospital, if they got sick, there was always someone there, the nurse, the attendant. When the patients are sent home, the feelings are divided. On the one hand, they are happy that they are out of the hospital and are together with their families, and, on the other hand, they are anxious and worried because they have to come into contact with a new medical team, they must face – alone – assumed or possible health problems that may appear because of the treatment. If you speak to them and explain organisational aspects, the documents and papers that they have to obtain, if you speak to them about the notions related to what tuberculosis means, how it is treated and what its symptoms are, they get so tired at a certain point because of all that information they have to remember, that they have a mental block and are unable to follow you from that point on.

I believe that, in many cases, the physician judges things from his or her level of understanding, which is very high, without realising that the patients’ level of understanding, regardless of their training, is very seriously influenced by their state of mind. The information delivered to the patients must be structured according to the priority: what is the most important thing I have to convey to the patients when they come to take their treatment or have their tests done? Each time the patient comes, the physician or the nurse or the psychologist, depending on each case, must provide some more information.

– So, the patient must be provided with information gradually, to be able to assimilate it.

– Yes. And to be repeated the important information. Otherwise, the message doesn’t get through. Often, there are situations when the patients do not understand the importance of hospitalisation and they say: “What do you mean, I spend Christmas in hospital?” And the physician does not always understand this attitude, because he or she thinks from the perspective of the responsible person. They think it is normal to want to stay in hospital during Christmas, in order to be at home and healthy the next Christmas.

– Because the physician has infinitely more information than the patient?

– Not only because of that, but also because the physician is outside the patient’s problem. That patient only sees the fact that, during the holidays, at a time of maximum importance to him or her, they are taken away from their family and held in a place where they are given a tag – the tag of a patient suffering from a severe disease called tuberculosis. And at this point there is need of a little more empathy on the part of the medical practitioners and of more understanding for the patient’s needs other than the physical ones.

– You have developed a patient-friendly brochure together with the LHL in Norway.

– This brochure has been compiled with the help of several tuberculosis patients and is dedicated exclusively to tuberculosis patients. Its aim is to ensure accurate and proper information, to facilitate understanding and increase patient responsibility, resulting in treatment adherence, as well as to help in the patient’s relationship with the physician. We made a first variant of the brochure and then we tested it with other patients, asking them whether they understood the information, whether they had anything to add to what was included in it, whether they wanted other things in the brochure in terms of form and content. Based on their suggestions, we developed the second variant of the brochure and gave it to other tuberculosis patients. We again made changes and now we hope it is a useful tool that the patients may keep with them. We want it to provide simple, clear and relevant information which may be understood by all the people who read it, regardless of the physical or mental state they are in at that particular moment. Every time they have questions or have not understood something, or when they are unable to remember what the physician told them, they may read about it in the brochure, which in this way is useful to the physicians as well, helping them communicate.

– How will these brochures reach the patients?

– We will print out 10 000 copies which we will distribute in the National Tuberculosis Prevention, Surveillance and Control Programme (PNPSCT) network. We have a partnership with the National Penitentiaries Agency (ANP). There are more tuberculosis patients, not just 10 000, but the brochure may be multiplied at any time.

– You have another interesting activity, the patient support network.

– Yes, we have recently organised a support network for patients with extensively drug-resistant tuberculosis (XDR), a network of peer supporters formed of volunteers who ensure the psychological support for the patients who undergo treatment, in particular for the Group 5 medicines.

– What are Group 5 medicines?

– Group 5 medicines are medicines that cannot be found in Romania, they cannot be obtained through the Romanian medical system, they are bought exclusively from abroad and are new medicines in the treatment of tuberculosis, still under assessment. These are very expensive medicines, with a very big impact on the body, with side effects that are difficult to bear by the patients. This is also why patients who take Group 5 medicines are admitted for longer periods of time compared to those who take the other types of treatments. Not all XDR patients can take these medicines, because they are only administered under certain conditions and only the physician may say whether a patient is eligible for taking this treatment.

– Where do you recruit volunteers for this network from?

– There are many persons who want to work in an NGO. Psychologists, social workers… And, because we provide services for patients with MDR-TB and not only, we also recruited volunteers from among such patients – persons who are willing to work, who can cope with this kind of service. We have trained them by providing communication courses and interventions based on their needs, such as interventions related to self-esteem, trust and so on. Being peer supporters helps these patients or former patients heal themselves not so much from the disease, but from the experience. With former patients, the disease has been cured, but the experience has not, and this helps them reintegrate by helping others, it is like a gradual desensitisation. They expose themselves to the problem without in fact being in that problem and then they realise that they are past the phase in which the people they support are now, they realise that they had resources and now are able to help others… It helps them heal on the inside.

– How many peer supporters do you have now in the project and how many patients do they work with?

– We have 15 peer supporters working with 45 patients. There are psychologists who work on patient evaluation, we have the diagnostic – with the patient’s and the physician’s consent –, we have the treatment and the adjacent diagnostics so that we may get an image that is as complete as possible on that patient’s suffering. We perform a social evaluation, to see whether the patient needs help in terms of various aspects, and we also perform a psychological evaluation. The psychological evaluation looks at the patient’s degree of motivation to follow the treatment, at the patient’s limits and resources. Patients are divided according to this overall image and according to the profile of the volunteers we have in the network. Among the 45 patients evaluated and introduced in the peer support work, apart from two who died, all the others are treatment-adherent. Because, as one of the former patients said, you do not heal from tuberculosis when you complete the treatment, but when your soul heals as well.