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Improving control of drug resistant tuberculosis in Arkhangelsk Region including prisons

Project title Improving control of drug resistant tuberculosis in Arkhangelsk Region including prisons
Database Data manually inserted in the NDPHS Database
ID in the source database 1140
Thematic area
  • Health Promotion, Education and Information
  • Prison Health
  • Public Health Epidemiology
  • Tuberculosis
Topic Prevention and combat of communicable diseases, competence building , training and sharing of experiences from Arkhangelsk with neighbouring regions in Northwest-Russia.
Project geographical area Russia
Substate level / administrative units /regions Arkhangelsk Oblast
Lead partner (organisation)
Lead partner (owner or/and project manager) no data
Partner organisations
Start date 2008-01-01
End date 2010-12-31
Duration (months) 36
Target audience Direct beneficiaries: TB patients, health workers in Tb control, Medical university students. According to the agreement between the parties:
● Access to medical services shall be free of charge;
• All TB patients including convicts shall be indiscriminately provided with TB treatment;
● TB in- and outpatients shall be provided with free TB treatment and drugs.

Indirect beneficiaries: The tuberculosis control programme is covering the total population. It covers children and adults, indigenous populations, prison population, psychiatric patients etc.

Experience is shared through trainings with TB control authorities in neighbouring regions of Murmansk, Karelia, Komi.
Summary The Health administration, the Northern State Medical University and the prison sector in Arkhangelsk oblast (region) in Northwest Russia have collaborated since the 1990s with the Norwegian Heart-and Lung Patients Organisation (LHL) and the Norwegian Institute of Public Health (NIPH) in strengthening the Tuberculosis Control Programme in accordance with international recommendations. The collaboration has changed over the years from first revising the TB program to be in line with international recommendations, then to manage MDR-TB and since 2007 focusing on strengthening the recording and reporting system and on measures to strengthen the treatment outcomes by training in effective health communication,developing new information for TB patients, peer work among TB patients.
Background Background and status 2008:
The Archangelsk oblast (region) in Northwest Russia was one of the first oblasts to revise the tuberculosis control program in accordance with international recommendations. The oblast health authorities, the TB dispensary and the Northern State Medical University started the revision in 1997 and included since 1999 also the Prison system. The Norwegian Heart and Lung Patient Organisation (LHL) and the Norwegian Institute of Public Health (NIPH), the last focusing on laboratory strengthening, have supported the revision of the TB Program. Diagnosis, treatment, infection control and the information system for TB statistics have been strengthened. Activities to control multidrug resistant tuberculosis (MDR-TB) have been carried out assisted by Norwegian partners and WHO since 2003. Staff from the TB control services in civil and prison sectors have been trained in:
• how to control MDR-TB concerning clinical aspects,
• infection control,
• management of adverse drugs reactions,
• drug procurement and management,
• organisation of long term MDR-TB treatment,
• social support measures to reduce default rates and
• strenghtening of skills to communicate effectively with patients and
• how to develop patient centered and user friendly information materials on TB, MDR-TB and co-infection TB and HIV.

TB drugs: The TB program in Arkhangelsk has succeded in reducing the number of TB patients through strenghtening the organisation of case finding and treatment. The levels of MDR-TB are very high but the program has gradually started most MDR-TB patients on treatment with 2nd line drugs, mainly through the Global Fund against Tuberculosis and malaria (GFATM)/Russian Health care Fund (RHCF), and has reduced the proportion of new MDR-TB cases. The TB programme does no longer need support from Norway for 2nd line drugs. It has been suggested that funding of 3rd line drugs for very resistant cases of TB can be taken care of by regional budgets. The local funding for 3rd line drugs has however been unstable in 2008.

Food incentives to reduce default rates:
The default rates are fairly good for ordinary TB treatment at approx 5-6% but higher for MDR-TB treatment. The regional authorities has in the planned budget for 2009 included funding of food incentives for 350 TB patients in addition to the support provided through the RHCF grant with Red cross. This activity has in the previous years been funded by LHL. From 2009 will the LHL-Arkhangelsk TB control cooperation project focus only on competence building and training trainers within Effective Health Communication and developing a unified reporting and information system for TB statistics that include MDR-TB.

External reviews: The tuberculosis control programme has documented to be successful and the approval from the Green Light committee, the WHO set up body to give access to buy MDR-TB drugs at concessional prices, is an acknowledgement of the results achieved, but also an evidence of the huge challenges for the region concerning MDR-TB.

An external review of the internationally supported Tuberculosis (TB) control programs in Russia took place in July 2006 with the goal to make a comprehensive assessment of the impact of international TB control programs in the Russian Federation in the context of 10 years of international collaboration. The external review showed a substantial progress achieved in TB control in Archangelsk oblast, however growing MDR-TB rates cause a serious concern and deteriorate the overall epidemiological situation of TB in the region. The Russian Health Care fund has now provided Arkhangelsk with 2nd line drugs to treat all waiting MDR-TB patients (from the GFATM grant to Russia). It will take many years to manage MDR-TB in the region due to several years of almost uncontrolled spread of the MDR-TB strain in prisons and community due to lack of drugs to treat MDR-TB. This represents a huge challenge.

New measures to fight Tuberculosis: To involve the community in information campaigns, fight TB stigma by involving TB patients as a resource to restore dignity and respect are important tools to control MDR-TB in a long term perspective. This project proposal addresses the recommendations from the external review of the TB control services in Arkhangelsk:
• to strengthen the Health communication and IEC components to improve case detection and late referrals of TB suspects,
• to improve knowledge among health personnel and community awareness on TB. The current project proposal addresses these issues.
Objectives Main objective:
• To reduce Tuberculosis morbidity and mortality rates throughout the region including the prison system in accordance with the Millenium development goals, the Euro – Arctic prime minister Kirkenes declaration and the Global plan to fight tuberculosis.
• To prevent the spread of resistant forms of tuberculosis (MDR-TB and XDR-TB).
Specific objectives/indicators Specific objectives:
Objective number 1. A unified reporting and information system for TB statistics that include MDR-TB will be completed and in use. The TB data base will provide sound data for epidemiological analysis by the end of 2010.
-Statistics and reports generated from the electronic/computerized monitoring system.
-The outcome of patients with drug-resistant TB, including MDR-TB -The results of the MDR-TB treatment ( category IV) and the results in subgroups

2. By the end of 2010 all TB patients in Arkhangelsk are well informed about Tuberculosis through the new set of patient-centered and user-friendly tuberculosis booklets. The Booklets "Speaking openly about Tuberculosis will be developed and pre-tested for relevance, familiarity and acceptance with participation of TB patients, printed and are being distributed to all patients. The booklets will be helpful to manage the emotional stress, to speak openly about the disease, face stigma and deal with it. The communication materials/booklets combined with trained health personnel and TB peer workers in communication skills enable patients to:
• Complete treatment,
• Deal well with their own disease
• Communicate openly about the disease to family and community, and thus contribute to reduce stigma and increase case-finding.

-Number of booklets developed and distributed
-Report from in-depth interviews and focus group discussions on effect of use of booklets
-MSC (Most Significant Change) stories and user survey on significance of peer work
-Assessed behaviour change by baseline-studies, observation tasks and reports from group sessions, monitoring change of communication skills through MSC stories technique.
-Number of trained health personnel and number of trainers trained.

Expected outcomes:
The computerized version of the reporting and information system is up and running.
All MDR-TB cases from the handwritten register and treatment cards are entered into the electronic recodring and reporting system

Statistics and reports generated from the electronic/computerized monitoring system.

The tuberculosis reporting and information system enable proper recording of diagnosis, monitoring and care in addition to reporting outcomes of treatment. The 2006 WHO guidelines on “Programmatic Management of Drug Resistant Tuberculosis” build upon the experience made from the DOTS plus projects. The information system for Multi Drug resistant Tuberculosis (MDR-TB) is an extension of the information system for non-resistant tuberculosis, and is fundamental for following trends in MDR-TB, to plan for drug needs and to monitor the impact of MDR-TB treatment. Among the countries of the former Soviet Union Arkhangelsk has been identified by WHO to deliver this experiences based knowledge for further policy making in the field of controlling MDR-TB. To build a computerized information system in Arkhangelsk is a kind of “pilot” for implementing this system.

The aims of tuberculosis reporting and information systems are twofold:
• To allow managers of TB control programmes at different levels to monitor overall programme performance as a basis for programme and policy developments. Performance indicators include
o The outcome of patients with drug-resistant TB, including MDR-TB o The results of the MDR-TB treatment ( category IV) and the results in subgroups

• To aid staff in treatment units to provide adequate management of individual patients

The objective of this project is to complete the development of a computerized reporting and information system. All the reporting can be handwritten. However an electronic version entering the all data concerning treatment from Category IV treatment card (form10) including all laboratory data is highly desirable since it facilitates better quality of information as well as data analysis.

1. “Guidelines for the programmatic management of drug-resistant tuberculosis”, Geneva, WHO 2006
2. “Treatment of tuberculosis: guidelines for national programmes” 3rd edition. Geneva, WHO 2003
3. “Management of tuberculosis: training for health facility staff. How to organise training for health facility staff on Tb control”, Geneva,WHO 2004
4. Enarson DA et al. “Management of tuberculosis, a guide for low income countries”, 5th ed, Paris, International Union Against Lung Diseaseses and Tuberculosis, 2000.

Objective 2:
Fighting Tb stigma- speaking openly about Tb and Hiv,- involving Tb patients in development and use of booklets as communication tools.

The short term aim is to develop communication materials/booklets and train health personnel and TB peer workers in communication skills to be able to motivate and enable patients to:
• Complete treatment,
• Deal well with their own disease
• Communicate openly about the disease to family and community, and thus contribute to reduce stigma and increase case-finding.

-Number of booklets developed and distributed
-Report from in-depth interviews and focus group discussions on effect of use of booklets
-MSC (Most Significant Change ) stories and user survey on significance of peer work
-Assessed behaviour change by baseline-studies, observation tasks and reports from group sessions, monitoring change of communication skills through MSC stories technique.
- Number of trained health personnel and trained trainers.

To communicate well with patients, health workers, physicians, policy makers and donors is essential for a TB program to reach its aims successfully. To involve patients, improve TB advocacy and involve community in the fight against tuberculosis is in line with the latest WHO statements on important measures to improve treatment outcomes and increase TB detection rates (Global plan to fight TB 2006-2015). In 2006 the TB patient charter and The international standards for care have been published, both releases underline the importance of effective health communication, TB patient empowerment and community involvement. Non governmental organisations and patient associations are given a special responsibility based on their competence and experiences. The TB Control programme and its partners in Arkhangelsk has commenced on this task in close collaboration with LHL.

The Stop TB Strategy and the Global Plan to Stop TB recommends to pro-actively and systematically involving patients and their communities. By involving all stakeholders a broader foundation is laid for other actions than only purely medical interventions. We know from research that the way health providers communicate with patients affects disease treatment outcomes. Improved health communication is a tool to empower all stakeholders in TB-control. Emphasis on patient empowerment and communication skills training should make a difference and contribute in reaching improved treatment outcomes, reduced defaults and give new tools to TB patients to manage how to cope with their disease.

A major aim of LHL’s work is patient empowerment – to enable the patient to take better care of his or her own treatment and own health, and be able to speak openly about the disease to improve knowledge and reduce stigma. The key to facilitate empowerment is the health worker – through direct contact with and treatment of the patient (inpatient and outpatient treatment), through training of family members and care takers, and through training of former patients (FTBs) to become peer workers. The main components within empowerment is that TB patients are able to handle, better take control over their own lives and health, their ability to help other TB patients to improve their life and health and lastly their ability to assist the TB control programme and health personnel.

Formulating the problem:
Why training in effective communication?
TB patient user survey and baseline studies among health workers from Arkhangelsk show that communication between health personnel and TB patients needs to be improved and that health personnel do not practise basic communication skills in order to meet the patient with respect. The reports suggest that the communication become too parental and judgemental, moralistic and categorical and consequently stigmatizing. This is partly explained by the demographic distribution of the patients and health workers. The majority of the patients are male between 25-45, often with a history of imprisonment, alcohol abuse and lower grade education and without work and the majority of the health workers are on the other hand female with median age 40-60, higher education and with few social problems. The style of communication becomes parental as towards children often blaming, and behaviour is expected to be rule based and disciplined. Health workers report that patients are”difficult and socially disadapted”. They report many disciplinary problems related to violence and alcohol abuse and that they are afraid of getting tuberculosis themselves. The information materials that have been used up till now in Arkhangelsk have contained many difficult medical terms and with a highly biomedical perspective. No leaflet seen has asked patients what they want to know about the disease.

In 2006 a user survey among 127 MDR-TB patients was conducted. The patients were asked to share their views on how they appreciated to receive health information and from whom. The results showed that they rated highest to have talks with the doctor and secondly to receive information from peer TB patients. Secondly the patients were asked to suggest how to improve the quality of the treatment services and use of free time.

Based on the results of the survey and reported communication problems is was decided to commence on developing new communication materials, based on TB patients needs and experiences. The current drafted new booklets have been developed asking Tb patients “What would you like to know about Tuberculosis?” and “What experiences do you have with TB that you can share with others?” This field work has resulted in 6 draft booklets divided into different themes of concern: What is TB, TB and treatment, resistant forms of TB, TB and Family – how to live a social life with TB, TB and HIV. The draft booklets are enclosed to your information. NB! They are not yet ready; they are in the process of being pre-tested with TB patients, relatives and health workers and will be amended to suggested changes both in text and pictures.

Poor communication contributes to TB stigma and poor treatment outcomes. Tuberculosis is a life threatening and infectious disease causing a lot of fear. People are afraid and an automatic instinctive response to danger is protection. To exclude and isolate TB patients and stigmatize TB patients are ways people protect themselves. This project is involving TB patients in needs assessments of what they need and would like to know about tuberculosis and what experiences they have about TB that can be shared with others. The TB booklets will contribute to reduce fear of TB and reduce TB stigma. The results of a very similar project of developing communication booklets by and with TB patients in Norway and Tanzania suggest that the process of involving TB patients in developing booklets that address their needs has enabled them to organise peer support activites and even a TB patient organization.The methodology of involving the users of the communication materials from the very beginning of needs assessment, through giving inputs and exchange experiences of what works well, pre-testing the drafts and undergo communication skills training to use these booklets as a communication tools facilitates respect and dignity.

Expected outcomes (ideally identify measures for your outcomes)
Improved TB treatment outcomes: All Tb programme indicators for Treatment outcomes will be relevant here especially the TB default rates that are currently 6% for sensitive TB and more than 14% for MDR-TB.

TB patients are involved in needs assessment and development of information about tuberculosis.
  • TB patients are enabled to speak openly about TB through use of booklets
  • TB patients reports to feel dignity and respect in interaction with health workers
  • Less TB stigma
  • Peer work among TB patients organised
  • Health personnel practise basic communication skills
  • Health personnel acknowledge the TB patient as a resource

    • Treatment outcomes: TB default rate reduced by 1%¨
    • Number of draft booklets developed and pre-tested
    • Manual on basic communication skills needed to use booklets as communication tool
    • Number of health workers trained and involved in pre-testing of communication materials
    • Number of TB peer workers trained and involved in the booklet process
    • Number of Tb patients as members of the TB Fund
    • Most Significant Change stories and user survey on significance of booklets to create dignity and respect, less stigma, involvement of Tb patients/peer work as domains of change
    • Assessed behaviour change by baseline-studies, observation tasks and reports from group sessions, monitoring change of communication skills through MSC stories technique.
    • Measure TB Stigma through use of Social Participation Scale and/or qualitative impact study of booklets on TB stigma (protocol currently developed an tried out with LHLs partner in Tanzania who has developed the same kind of participatory booklets with TB patients)

    • Chant, S & al (2002): Review: Communication skills: Some problems in nursing education and practice. Journal of Clinical Nursing; 11: 12-21
    • Chant, S &al ( 2002) Communication skills training in healthcare: a review of the literature. Nurse Education Today, Vol 22 pp189-202.
    • Dick J, Van der Walt H, Hoogendorn L, Tobias B. Development of a health education booklet to enhance adherence to tuberculosis treatment. Tubercle and Lung Disease 1996: 77 173-177
    • LHLs manual for how to conduct peer work and manual for peer work in hospitals
    • Marra Carlo A. et. al (2004): “Factors influencing quality of life in patients with active tuberculosis”. Health and Quality of Life Outcomes, 2004, 2:58.
    • Kruijver, I.P.M & al (2000): Evaluation of communication training programmes in nursing care: a review of the literature. Patient Education and Counseling, Vol 39 Issue 1 pp 129-145.
    • McCabe, C (2004): Nurse-patient communication: an exploration of patients’ experiences. Journal of Clinical Nursing 13 (1), 41-49.
    • Haaland, A. and Molyneux, S (2006): Quality information in field research. Training manual on practical communication skills for field researchers and project personnel. WHO/TDR library
  • Results Objective number 1. A unified reporting and information system for TB statistics that include MDR-TB
    Expected outcomes:
    - proper recording of diagnosis, monitoring and care in addition to reporting outcomes of treatment
    -Improved quality of information as well as data analysis.

    Objective 2: concerning developing Tb booklets and applying effective communication skills:
    Expected outcomes:
    • TB patients complete treatment. TB default rates reduced to 5% for sensitive TB and under 15% for MDR-TB treatment
    • TB patients are involved in development of information about tuberculosis and use them actively.
    • TB patients are involved in peer activities, peer groups and use of booklets together:
    a. TB patients take part in user-surveys and needs assessments and take part as peer workers in the programme
    b. Health personnel practise basic communication skills
    c. Health personnel acknowledge the TB patient as a resource
    Total foreseen budget EUR 132,000
    Total implementation costs
    (for completed projects, if available)
    EUR 300,000
    Conversion to € was done on
    (according to the relevant
    exchange rate at
    Infoeuro Monthly Files)
    Financing agencies / organisations
    Project's URL / project's website,, and
    Papers associated with this project no data
    Further information Evaluation of the cooperation project: An external evaluation of the 10 years of cooperation and outcomes of the project cooperation will be done by the end of 2009 with participation from UNION – International Union against Tuberculosis and Lung Disease, WHO, Russian central Tb institutes and possibly FILHA (not yet asked) or KNCV. The Project will be internally evaluated by the members of the RCTD through quarterly reports from the TB fund) of treatment outcomes and case finding. The TB consultants in LHL will do follow-up visits and evaluations of progress made.
    The programme is also monitored by the WHO set up body; Green Light Committee as external evaluations.
    The Cooperation Agreement between the Health Department of the Administration of the Arkhangelsk Region and LHL was signed in 1998. It expires on December 31, 2010 and has the following signing parties:
    • Head of health care department, Archangelsk Dr S.D. Emmanuilov
    • Chief of Federal Prison Administration , Russian Federation, 1st grade counsellor of the State Y.I Kalinin
    • Rector of the Northern State medical University, P.I. Sidorov
    • The Norwegian Association of Heart and Lung patients President S.E. Myrseth
    The Agreement is intended to facilitate the implementation of the Reduction of TB Expansion Programme.
    Last posted: on 2009-08-26 at 16:52:01

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