“Vrem sa traim!” Nevoile pacientilor cu tuberculoza din Romania – Raport 2014

12.06.2014

The TB patients in Romania are a large group, disadvantaged, stigmatized and almost sentenced to death, and the society doesn’t even know of their existence. In Romania, the disease kills 1,200 people and affects other 15,000 per year, mostly among the young and active population. Romania is the EU country with the highest number of cases of tuberculosis, which are diagnosed late and do not receive full and quality treatment and lack social protection measures: tens of thousands of people and their families almost left at the mercy fate. And just as serious, other millions of people are exposed to the disease and at risk of developing it, without knowing if and how they could prevent this.

The Association for Multidrug Resistant Tuberculosis Patients Support (AMRTPS) and the Romanian Angel Appeal Foundation (RAA) conducted, in the first half of the year, a mapping of the TB patients’ needs in Romania, through a study which analyzed the points of view of patients, their families, medical personnel, and the decision makers in the field.

The study – qualitative and quantitative, consisted of eight focus groups in tuberculosis hospitals in Bucharest, Ilfov, Bisericani Leamna, Moroeni (involving patients with tuberculosis (TB) and multidrug-resistant tuberculosis (MDR-TB) and legal representatives) and with specialists in Bucharest, Targoviste, Ploiesti, a sociological survey on a sample of 80 patients with TB under treatment in Bucharest and Bisericani and interviews with representatives of the National Tuberculosis Control Programme, the Ministry of Health and the National Institute of Medical Assessment and Work Capacity Rehabilitation.

The study results were published in the report “Mapping of Romanian TB Patients’ Needs”, which will be distributed both to policy makers and the general public, to raise awareness of the severity of TB issues in our country and to determine authorities in the field to improve the prevention and control measures. The report will contribute to drafting a proposal for a legislative act on the control of tuberculosis in Romania, which AMRTPS and the RAA Foundation will submit to the decision makers by the end of September 2014.

This report was developed within the project “Together for a Tuberculosis-free Romania”, implemented by the Association for MDR-TB Patients Support (AMRTPS) and the Romanian Angel Appeal Foundation. The project is co-funded by a grant from Switzerland through the Swiss Contribution to the enlarged European Union.

For details, please contact: Stefan Radut, Project Coordinator, Vice-president AMRTPS
Mobile phone: 0720.156.158;  AMRTPS phone: 021.313.43.63

Rapid diagnosis, free, complete and quality treatment, support for the families, psychosocial support and work reinsertion, reducing stigma:
We want to live!

The qualitative and quantitative research conducted earlier this year by the Romanian Angel Appeal Foundation (RAA) and the Association for Multidrug Resistant Tuberculosis Patients Support (AMRTPS) among patients with TB in our country and among specialists show that correct and rapid diagnosis, enrollment in a complete treatment regimen with quality anti-TB drugs, coupled with adequate nourishment and psychological support, financial support for the patients’ families, assistance for work reinsertion and measures to reduce stigma are the most pressing needs of patients with tuberculosis and multidrug resistant tuberculosis in Romania.

On the way in which these needs are covered depend the correct approach to disease, the treatment adherence, the successful intervention and the socio-professional reintegration of patients. In short their chance at life.

Also, better information of the public about tuberculosis (transmission, symptoms, treatment, etc.) would contribute to decreasing the disease burden in the general population as well as to a more timely medical check of the potential patient and an early diagnosis and initiation of treatment.

What is Tuberculosis?

Tuberculosis is an infectious disease that affects the lungs.

Tuberculosis is an airborne infection transmitted from a sick, contagious person who is not under treatment to a healthy person, through droplets of saliva spread through coughing, sneezing, talking loudly, singing, etc. Any person, regardless of social condition, is at risk of infection if they breathe the air containing droplets with germs.

The TB treatment requires a very long period of hospitalization / isolation and treatment (3 to 24 months), which can lead to the patient losing their job and, therefore, an important source of income for the family. Also, the treatment has severe side effects (physical and psychological). The medication side effects, the risk of job loss or temporary improvement of health after a short period of drug administration, determine the patient, many times, to discontinue the medication. This is an extremely dangerous situation because it increases the risk of disease progression to multidrug resistant (MDR-TB) and extensively drug resistant (XDR-TB) tuberculosis. These diseases require long periods of hospitalization and treatment difficult to bear and, unfortunately, have a very low success rate.
Furthermore, the MDR-TB and XDR-TB patients transmit drug resistant forms of tuberculosis.

Tuberculosis is a disease that can be cured only with consistent medication and proper nutrition and life style. Untreated properly, tuberculosis causes death.

Needs of patients with TB in Romania: what does the 2014 study show?

The experience of being diagnosed with tuberculosis and the management of the disease and comorbidities are difficult to bear. Diagnosis disclosure (especially for MDR-TB) is not always accompanied by clear information about the causes, the disease and the treatment demands. Also, long period of diagnosis for MDR-TB makes the patient confused and mistrusting the competence of health professionals.

The TB treatment has side effects that are difficult to bear (both physical and psychological).

In addition, prolonged treatment and hospitalization force the patients to long periods of inactivity. Re-insertion in the labor market can be difficult, due to reduced work capacity but also to the stigma associated with tuberculosis.

Patients’ self-image is also affected by social exclusion.

In terms of adherence, the study shows that 13 of 80 respondents (16%) discontinued treatment at least once (seven for more than a week, three between 2 and 4 weeks, three for more than one month).

Reasons for discontinuation were “I felt sick” (30%), “I felt better” (23%) or other (47% ex.: “I was out of town” “I didn’t want to go to the clinic anymore”).

The main needs for increasing adherence and successful completion of treatment were identified as: family support (46%), proper nutrition (32%), money / social welfare / some sort of income (23%).

The most difficult experiences during treatment: “to stay in hospital” (60%), “not to be with family” (35%), “to sit and do nothing” (30%) and “to cope with side effects” (30%).

The main concerns experienced by patients after treatment: fear that after completing the treatment they might get sick again (40% of respondents), fear that they will not be able to practice the same profession (28%), fear that nobody would hire them because of the disease (16%).

Solutions to personal concerns: lifestyle changes to prevent future illness (28%), finding a job (20%), financial support from the state (18%), complete and correct administration of the treatment (14%), psychological support from family or a specialist (14%), periodic medical examination (12%), information and education on TB (9%).

Priorities for intervention in tuberculosis, in the context of a reduced national budget: the perspective of experts and representatives of relevant public institutions (National Tuberculosis Control Programme, Ministry of Health and the National Institute of Medical Assessment and Work Capacity Rehabilitation).

The study conducted by the RAA Foundation and AMRTPS in the first part of this year reveals two priority directions of action on intervention in tuberculosis:

1. Reducing the risk of TB transmission by:

  • Measures and support services to increase adherence to treatment, especially for MDR-TB and XDR-TB;
  • Free access of patients to complete and properly administered treatment;
  • Identification and active tracking of patients at risk of  non-compliance to treatment (through cooperation between the Ministry of Health and The Ministry of Labor, Family, Social Protection and the Elderly to ensure the provision of material support, the effective activation of the Directly Observed Treatment – DOT system and the involvement of social workers in the community);
  • Measures to reduce side effects of treatment and support for overcoming them;
  • Improving the TB infection control by separating the pulmonology department from the TB department and the sensitive TB patients from those with MDR/XDR-TB (by improving the infrastructure, the establishment of special circuits in health facilities, separate wards etc.).
  • Rapid diagnosis of infection MDR/XDR-TB.

2. Reducing the risk of quality of life deterioration for people affected by TB, due to the diminishing of physical capacity and long periods of inactivity due to prolonged treatment or hospitalization by:

  • Review of paid sick leave period from 1 to 2 years – as a special measure of protection, especially for patients with MDR/XDR-TB, thus facilitating therapeutic success. Currently, patients with pulmonary conditions have a special medical leave of 1.5 years.
  • Access of people affected by TB to psycho-socio-professional services that provide professional skills assessment and, if necessary, professional reorientation and requalification (qualification/requalification training courses);
  • Access of people affected by TB to recovery services that ensure the possibility of retraining to effort – so at the end of the medical leave they are ready to resume work;
  • Measures to reduce social stigma and discrimination associated with tuberculosis.

See the complete Report here.

Arhiva stiri

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