Project financed by the Norwegian Grants 2009 - 2014, within the RO 19 - Public Health Initiative.
Pulmonologist Cristina Popa, from the “Marius Nasta” Institute of Pulmonology, on the challenges faced by patients with multidrug-resistant tuberculosis.
Cristina Popa has been working as a physician in the multidrug-resistant and extensively drug-resistant tuberculosis patient ward of the “Marius Nasta” Institute of Pulmonology in Bucharest for over 11 years. She has seen, examined and spoken to thousands of patients and the couch in her office is not where she invites her colleagues to sit during coffee breaks, but where she has piled up files of patients hospitalised in this ward, separated by green notes labelled “A,” “B”…, “S,” “T,” “V”.
– I am aware of my human limits and, to be honest, for me it would be very hard to take this kind of treatment… No matter how careful I may be, I would certainly skip doses now and then.
She voices her thoughts out loud. She understands very well how hard it is for her patients to take between 12 and 30 pills every day, with side effects that are difficult to bear.
– We try to help the patients to go through with the treatment until it is completed. Ignorance is the most important factor that makes you stop the treatment, because if you don’t know what tuberculosis is, you most certainly will not give very much importance to the drug dose that you have to take that day. They tell themselves: It’s fine, now I feel better anyway, what’s the point in taking any more pills today?
Out of the energy given by the passion for her profession, dr. Cristina Popa finds resources to convince the patients to complete the treatment, for their own good, and she does this day after day. She explains to them, for their understanding, everything about tuberculosis, about the effects that skipping the doses has, not only on them, as persons who have the illness, but on their families as well. And when a patient observes his or her treatment thoroughly, she is even happier than the patient, because she knows, better than anyone, that this is the key for the cure.
– We are a team here, and we try to explain things to the patients. Besides me, there is the nurse on duty on the day in question, and the psychologist. The nurses’ role is very important, because, in the end, a repetitive message is better understood. The psychologist is also very important, because of the meetings she organises with the patients. The message is conveyed differently by a psychologist and the fact that we give the same information in several ways is the most important of all. We give the patients a clear idea about the disease, and this idea sticks with them.
With all the joint efforts of the team of specialists, from time to time there are cases of patients who do not really pay heed to what they say. These are the patients who, several months or years later, return to the hospital beds of the pulmonology wards and restart the treatment, but this time it is a much tougher treatment, with even more drugs, for a form of tuberculosis that in the meantime has become much more resistant to the treatment than in the initial phase.
– Some do not take their treatment constantly and, after they are discharged from the hospital, they continue not taking it. Two months later they are assessed as “treatment discontinuation” but I would assess them as “treatment default.” When the treatment is provided for free and you do not care about it, I think that you, the patient, are most to blame.
Each death caused by the discontinuation or default of the treatment convinces her once again that she must do everything possible to help the patients take their medication as recommended by their attending physician. To some of the them, she talks about cases of patients who, sometime after beginning the medication, are already fit to return to work and still do not abandon their treatment.
– In my opinion, there are cases when you can take the treatment and go to work. There are patients who can do that, and I encourage it. They feel better when they feel useful and get back to their previous active life. I believe that mental balance can do wonders for the cure. They tell themselves: “I take the treatment and feel able to live as I did before the disease.”
Tuberculosis, as all specialists keep repeating, and as dr. Cristina Popa keeps repeating as well, is not a poverty disease, it does not pick and choose. Hospitalised patients include booth poor and wealthy people, blue-collars and engineers, homeless and managers or businessmen.
– It’s hard to sketch a profile of the multidrug-resistant patient now. I could not say that they are necessarily people living on outskirts of the society, that they do not have a home or are deprived of food… Generally, around 50% of the patients are persons who know and have lived with someone who had this disease and they took the tuberculosis bacillus from that person. Later on, unfortunately, due to a personal trauma or because they went through an extraordinarily stressful event or they lost someone in their family, the bacillus was activated and they developed this disease.
In case of suspected tuberculosis, the first hospital stay is, according to the classical approach, of around three months, during which the patient undergoes medical investigations. Only at the end of those three months and based on the laboratory test results we can know for certain whether the patient is contagious or not, whether he or she has sensitive tuberculosis, multidrug-resistant tuberculosis (MDR TB) or extensive multidrug-resistant tuberculosis (XDR TB).
– The major shock is when they find out that they must complete two years of treatment, in the case of MDR tuberculosis. Two years is a lot. Most patients are men and, in the majority of cases their knowledge is limited and their level of education is low, which often leads to carelessness in complying with the treatment. Most of them have graduated only middle or vocational school. There is a relatively limited number of patients with university degrees, who give importance to the detailed information about the disease and to the correct attitude towards a treatment that is by no means easy, but which may cure them.
Staying in hospital for three months, far from home, from family and from friends is another difficult challenge for the patients. Moreover, if the patient does not become negative, meaning that he or she continues to be contagious, hospital stay may be extended, sometimes even up to six months.
– Many patients at “Marius Nasta” are people who come to Bucharest because they are strongly motivated to go through with this treatment and therefore are capable to deal with this long stay away from their families. They are patients who either had a previous tuberculosis episode or received other treatments.
And, dr. Cristina Popa adds, there is yet another obstacle for the early detection of tuberculosis.
– Most patients who come to the emergency ward do so because they experienced abundant sweating, not because they have been coughing for two weeks, they have lost weight and feel more tired in the afternoon. They attribute these symptoms to smoking, stress or working too hard, and this delays the diagnosis.
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