For the TB Europe Coalition (hereinafter – TBEC) the promotion of a people-centered model of care is one of the important priorities. This model of care addresses gender characteristics, health conditions in general, and the social needs of a particular person. Sustainable Development Goal 3 includes a commitment to end the TB epidemic by 2030. The WHO End TB Strategy aims to reduce the global incidence rate of TB from an annual decline of 2% in 2015 to 10% by 2025, as well as reduce the proportion of people dying from this disease from 15% in 2015 to 5% by 2025. The important points to accelerate progress in achieving the set goals are the paradigm shift in the TB treatment and prevention and focus on integrated and people-centered TB services. The implementation of policies and activities aimed at health systems strengthening and the meaningful engagement of civil society and the communities affected by TB at all levels of the decision-making process and care provision is an integral part of the progress towards the end TB goal.
In order to show the various possible approaches to the organization of the TB services and systems to support people with multidrug-resistant and extensively drug-resistant TB (hereinafter – MDR/XDR-TB), as well as communities affected by TB, TBEC is launching a series of publications highlighting the experience of countries in Eastern Europe and Central Asia (EECA) at all levels of TB care provision. The first article in this section will be devoted to the experience of organizing services for patients with MDR/XDR TB in the Kyrgyz Republic (hereinafter – the Kyrgyz Republic or Kyrgyzstan) in 2016-2019.
In 2016, the level of the epidemic in Kyrgyzstan exceeded 50 people with TB per 100 thousand of the population, and the country was among the 30 countries with a high MDR-TB burden. One particular concern was the lack of success in the treatment for the MDR-TB patients, as well as the increase in the number of patients lost to follow-up to medical observation and treatment. Also, having low treatment success rates, it becomes possible to conclude that with successful treatment of only 53.7%, it would not be easy to achieve existing country goals. For example, in Bishkek, more than 70% of MDR-TB patients received treatment in a City TB dispensary, and unfortunately, for many patients, remoteness from their place of residence was a barrier to receive services at the institution. Social insecurity and side effects while taking drugs also served as a factor in treatment fatigue, which led to interruptions in treatment.
It’s no a secret that the treatment of MDR/XDR TB takes a long time and social and psychological support is quite important in this way in order to ensure the needed conditions when a person has enough motivation to continue taking the medication until to completely recover.
At that time, there were no services and non-governmental organizations (NGOs) that would offer social support with a patient-centered approach for the most in-need patients, so the demand for a project, that would provide a response to the existing need, only increased.
From August 2016 to July 2018, AFEW-Kyrgyzstan (hereinafter – AFEW KG) implemented a UNDP project funded by the Global Fund to Fight AIDS, TB, and Malaria (hereinafter – GF) “Effective TB and HIV Control project in Bishkek” .
Dmitry Samarin, project manager, AFEW KG: “Gaps in taking drugs and early treatment interruption are the most urgent problems in the field of tuberculosis. In 2016, there were more than 24% of all TB patients who interrupt their treatment in Bishkek as well as low adherence was observed among individual patients. To change the situation, new approaches to treatment were needed. AFEW KG had extensive experience in implementing case management (social support) programs for vulnerable groups in Kyrgyzstan in the field of HIV prevention. Having studied the best practices in other countries, in particular the experience of the “Sputnik” project in the Tomsk Region of the Russian Federation, we adapted it to the conditions of our country and proposed an alternative, patient-centered approach to managing patients with TB.
The main objectives included 3 components:
- Daily home delivery of TB drugs to the patients in Bishkek (who receive treatment at home because of the severity of the condition and family circumstances);
- Conducting information sessions among TB patients who formally refused to get treatment (patient’s school based on primary health care institutions);
- Conducting information sessions with families of TB patients who formally refused to get treatment (individual consultations at home)”.
The AFEW KG project “Effective TB and HIV control” was implemented in collaboration with the Bishkek City TB Center in accordance with the memorandum of cooperation between the TB dispensary and AFEW KG, signed in 2016. The project was implemented in close cooperation with the National TB Program (hereinafter – NTP), in collaboration with both the Bishkek City TB Center and the regional MDR-TB coordinators of Chuy oblast.
The main objective of the project was to reduce the number of treatment interruptions among people with MDR-TB in Bishkek. For this purpose, work on adherence and return to treatment was provided for patients who discontinued treatment or interrupted it periodically for various reasons. Given work included motivational counseling and a proposal to complete treatment with the help of the social support program.
As a result, during the implementation of the project, 81 people returned and continued treatment, and 114 patients received home delivery services and video DOT (directly observed treatment) as part of the program.
At the time of the end of the project in July 2018 in a total of this number:
- Completed treatment – 61 people;
- Continue treatment – 29 people;
- Fatal outcome – 6 people;
- Lost for observation – 14 people;
- Ineffective treatment – 4 people.
In addition, to improve the treatment outcomes of MDR-TB patients in the framework of the project, the reasons why patients were experiencing treatment fatigue (which led to interruptions from treatment) were analyzed.
Patients who did not complete treatment at the end of the project received support within the KNCV project “CHALLENGE TB PROGRAM” (December 2017 – March 2019). The project was funded by USAID and aimed at the programmatic implementation of individual and short-term treatment regimens in Kyrgyzstan; It became a logical continuation of the program.
The project used a patient-centered approach, it took into account the needs of people who were in difficult life circumstances and needed support. In total, 96 MDR-TB patients took part in the project and received social support services with the help of engaged specialists. Geographically, the project covered only Bishkek and Chuy oblast, where the TB services described below were provided.
The objective of the project was to provide patients with social support in adhering to the schedule of taking drugs and solving problems associated with the side effects of treatment. Support was provided through case managers – only 4 specialists with medical education and a social worker who had experience in the TB service. The task of the case managers was to adjust the schedule and place of dispensing of drugs to the rhythm of patients’ lives, as well as to help them solve social problems by referring them to partner organizations.
The number of selection criteria for inclusion of patients in the program were agreed:
- serious health condition after discharge from the hospital;
- bedridden patients;
- patients with disabilities (disability, cerebral palsy, diabetes mellitus);
- sick women in late pregnancy terms and with nursing babies;
- mothers with many children living in remote areas (new buildings);
- HIV/TB co-infection;
- patients with confirmed TB (BC+) cases refusing hospitalization in a hospital.
To achieve the set goals of the Project and reduce the number of treatment breaks, all clients were provided with the following services as part of the main activities:
- Home delivery of drugs, social support of patients, relief of side effects, counseling, psychological assistance, and support;
- Raising awareness of patients and members of their families, conducting information sessions;
- Maintaining a patient’s school (support, increasing responsibility for saving their health and motivational counseling for clients who were at risk of early termination of treatment) on the basis of medical institutions, working with patients with low adherence.
The main focus in the provision of services was made on the delivery of drugs to the home, which was carried out 6 days a week (except Sunday). In addition to drug delivery, project case managers conducted information sessions with MDR-TB patients and their close circle. Also, a regular survey was conducted to determine the level of knowledge on MDR-TB (questionnaires), monitoring side effects of TB drugs, and, if necessary, delivering drugs to the relief of side effects. All patients were motivated to keep in constant contact with their doctors.
A social worker provided support services for testing, treatment of comorbidities, and assisted in resolving social and legal issues.
The considerable results were achieved as a result of the work. In total, during the implementation of the project, 96 people with MDR/XDR TB who were on short-term and individual treatment regimens were included in the program of directly observed treatment at home bases: 54 women and 42 men.
In order to provide high-quality services, interaction, and coordination between the project case managers, attending physicians and KNCV employees was established. The Project staff also managed to develop and implement a system to track and timely respond to patient complaints, including undesirable side effects within the treatment process and assist in the relief of these appearances.
The special support system was established for routine diagnostics and examination, as well as consultations with narrow specialists for the most difficult patients.
Video DOT technology was successfully used within the project. In total within the project with the use of WhatsApp (free instant text messaging system for mobile and other platforms with voice and video communication support), Video DOT was performed for 18 patients of the project.
As a result of the project, 26 people successfully completed treatment, including 3 patients with XDR-TB. Unfortunately, as of March 2019, there were 6 cases of treatment interruptions, including ineffective treatment. Causes of treatment interruptions:
- 2 people – ineffective treatment/intolerance to drugs;
- 2 people – treatment interruption due to alcohol dependence;
- 2 people – refusal of treatment (disappeared, changed their place of residence).
As of March 2019 (end of the project), 64 patients with MDR/XDR-TB continued to receive treatment in the program. They continued to receive social support services in a program implemented by the National Red Crescent Society (hereinafter referred to as the NRCS), in which they successfully completed treatment.
Patient, MDR-TB: “I have been on TB treatment for 10 months now. Thank you very much for the KNCV and AFEW staff for taking care of me and curing me on time. You gave me an incentive and motivation to complete the treatment. Because of you, I did not give up and I promise you that I will go this way to the end, thank you for that.”
One of the main indicators of the success of the AFEW KG project can be that the treatment interruptions among patients who received services within the project are 6%, while in the whole country – more than 20% (data from 2017).
In order to show the overall dynamics in Bishkek and the Chuy oblast, an official report on the 2018 cohort of patients is needed, which is currently not yet ready. However, the following could be said about the success within the project as a whole:
- Currently, this model is integrated into the TB care system – the instruction of the Ministry of Health of the Kyrgyz Republic on managing a patient’s case using a patient-centered approach was developed and approved;
- Instructions for Video DOT were developed and approved;
- Standards for the state social order for NGOs in the field of TB services, which are based on this model, were developed and approved;
- This model is successfully used by the NRCS as part of the GF program.