National Guideline on Integrated Care for Tuberculosis ... file · Web view6. Integrated care...

National Guideline on Integrated Care for Tuberculosis

Person-centred care and support for patients with TB, DR-TB, HIV infection and groups at risk for poor treatment

outcome

CONTENTSAcronyms................................................................................................................................... 4Acknowledgements.................................................................................................................... 5Executive Summary...................................................................................................................61 Introduction............................................................................................................................. 7

1.1 Tuberculosis situation in Lithuania................................................................................71.2 The Lithuanian health system........................................................................................81.3 Rationale for the guideline............................................................................................81.4 Target audience for the guideline..................................................................................91.5 Development process of this guideline..........................................................................9

2 Integrated TB care provision – roles and responsibilities......................................................112.1 Actors in TB care provision and their roles and responsibilities...................................11

3 Person-centred care..............................................................................................................173.1 Integrated care coordinator and multi-disciplinary team.............................................17

3.1.1 Integrated tuberculosis care coordinator..............................................................173.1.2 Multi- or interdisciplinary team..............................................................................18

3.2 Intake Interview...........................................................................................................193.3 Individual care and support plan.................................................................................213.4 Treatment administration options...............................................................................22

3.4.1 Directly Observed Therapy....................................................................................223.4.2 Video observed treatment.....................................................................................233.4.3 Self-administered treatment.................................................................................23

3.5 Adherence support interventions.................................................................................233.6 Non-adherence and loss to follow up...........................................................................253.7 Contact investigation...................................................................................................273.8 Related guidelines.......................................................................................................27

4 Groups at risk of poor TB treatment outcome.......................................................................294.1 Patients with drug resistant TB....................................................................................29

4.1.1 Challenges and needs...........................................................................................294.1.2 Integrated care and support..................................................................................30

4.2 People living with HIV..................................................................................................304.2.1 Challenges and needs...........................................................................................304.2.2 Integrated care and support..................................................................................31

4.3 People with problematic alcohol use...........................................................................314.3.1 Challenges and needs...........................................................................................314.3.2 Integrated care and support..................................................................................31

4.4 People who use drugs..................................................................................................324.4.1 Challenges and needs...........................................................................................324.4.2 Integrated care and support..................................................................................32

4.5 Homeless people.........................................................................................................33

2Integrated care Lithuania

4.5.1 Challenges and needs...........................................................................................334.5.2 Integrated care and support..................................................................................34

4.6 Prisoners / persons with a history of imprisonment.....................................................344.6.1 Challenges and needs...........................................................................................344.6.2 Integrated care and support..................................................................................34

4.7 People without health insurance..................................................................................354.7.1 Challenges and needs...........................................................................................354.7.2 Integrated care and support..................................................................................36

4.8 Children.......................................................................................................................364.8.1 Challenges and needs...........................................................................................364.8.2 Integrated care and support..................................................................................36

4.9 Labour migrants..........................................................................................................37References............................................................................................................................... 38


ACRONYMS

ART Anti-Retroviral Therapy

CCDA Centre for Communicable Diseases and AIDS

CXR Chest X-ray

DOTS Directly Observed Therapy Short Course

DR Drug resistant

DS Drug susceptible

ECDC European Centre for Disease Prevention and Control

EWRS Early Warning and Response System

HIV Human Immunodeficiency Virus

IGRA Interferon Gamma Release Assay

LTBI Latent Tuberculosis Infection

MoH Ministry of Health

MDR Multi Drug Resistant

NGO Non-governmental organisations

NPHC National Public Health Centre

NHIF National Health Insurance Fund

PLHIV People Living with HIV

PHC Primary Health Care

SMS Short Message Service

TB Tuberculosis

TST Tuberculin Skin Test

VOT Video Observed Therapy

WHO World Health Organization

XDR Extensive Drug Resistant

ACKNOWLEDGEMENTS

A consultative process with different national stakeholders resulted in this guideline with support of a consultancy provided by the consortium of Filha and TBC Consult as part of implementation of a European Centre for Disease Prevention and Control (ECDC) project within the framework contract ECDC/2015/032 “Support to five high priority Member States in prevention and control of (Multidrug Resistant) Tuberculosis”. The consultants leading the guideline development were Miranda Brouwer (MD, PhD) and Nonna Turusbekova (PhD).

The consultative process consisted of an information gathering meeting in June 2018 when two international consultants met with several Lithuanian stakeholders representing Ministry of Health and Ministry of Social Affairs and Labour, National Health Insurance Fund, the TB services, the HIV services, social security services, public health services, services for people who use drugs (PWUD) or for the people with addictive disorders, Prison hospital, two Municipalities, and the civil society. Based on the information collected, the consultants developed a draft version of the guideline that was revised by Lithuanian stakeholders and ECDC. This draft guideline was further discussed during a consensus building meeting with representatives of a broad range of stakeholders in October 2018 when suggestions for improvement where provided. The consultants developed the final version following the input from the consensus building meeting and submitting it for review to ECDC.

The following people participated in the consensus building meeting (October 2018): Giedrė Aleksienė (National Public Health Centre under the Ministry of Health), Edita Bishop (Ministry of Health), Edita Davidavičienė (Vilnius University Santaros Clinics, TB registry), Saulius Diktanas (Klaipeda Hospital), Monika Jankauskaitė (Vilnius Social Care Centre), Kristina Jokimaitė (Ministry of Health), Daiva Junevičienė (Ministry of Social Affairs and Labour), Raminta Kudabienė (Vilnius Municipality), Joana Korabliovienė (Centre for Communicable Disease and AIDS), Virginija Mačionienė (Centro policlinic), Raimonda Matulionytė (Vilnius University; Vilnius University Santaros Clinics), Kęstutis Miškinis (Vilnius University Santaros Clinics), Jurgita Pakalniškienė (Ministry of Health), Aistė Raulušaitienė (Centro policlinic), Birutė Semėnaitė (Prison Department under the Ministry of Justice), Loreta Stonienė (Republican Centre for Addictive Disorders), Gintarė Urbonienė (Ministry of Social Affairs and Labour), Sigita Urbonienė (Caritas), Ginreta Valinčiūtė (National Public Health Centre under the Ministry of Health), Galina Zagrebnevienė (Centre for Communicable Disease and AIDS).

For support to the process of developing the guideline: Mikko Vauhkonen of the Finnish Lung Health Association (Filha).

For content support: Marieke van der Werf and Stefania De Angelis of ECDC.


EXECUTIVE SUMMARY

Tuberculosis (TB), both drug susceptible (DS)-TB and drug resistant (DR)-TB, continues to be a public health problem in Lithuania. The estimate of the burden of TB for 2016 was 53 per 100,000 population. Around 20% of all notified TB patients were multidrug-resistant (MDR), of which an increasing proportion has extensive drug-resistant TB (XDR-TB), 35% of MDR-TB patients in 2017. Treatment outcomes are rather poor: 68% of notified TB patients were successfully treated in 2015 and only 12% of MDR-TB patients notified in 2014.

The rate of new Human Immunodeficiency Virus (HIV) infections is increasing from 5.4 per 100,000 in 2011 to 7.4 per 100,000 in 2016. The main route of acquiring HIV- infection since 2004 is injecting drug use and one-third of the infections in 2017 were acquired in prison. Groups at higher risk to be infected with TB and subsequently develop the disease, also have higher risks of an unfavourable treatment outcome. Such groups include people who use alcohol problematically or use illegal drugs, homeless people and prisoners.

Patient-centred care is an important aspect of the current global Strategy to END TB but not yet sufficiently developed in Lithuania. This guideline describes ways for integrated TB care delivery and targets health care professionals at the primary health care and at the hospital level, including Directly Observed Therapy Short Course (DOTS) rooms and penitentiary institutions, professionals in addiction services and staff working with people who use illicit drugs or have problematic alcohol use; public health professionals responsible for the prevention of TB including contact investigation; municipalities and their authorities responsible for the organisation of health care and social care services; social care professionals; civil society organisations and patients’ organisations that may work with individuals who have TB; staff in homeless shelters; and non-health care staff of the prison hospital.

This guideline contains four chapters.

Chapter 1 includes a description of the current TB and HIV situation in the country as well as a description of the Lithuanian health system. It explains the rational for this guideline and the development process to draft it. The purpose of the guideline is to contribute to improved TB patient treatment outcomes, which should ultimately contribute to reducing the burden of the disease in the country.

In chapter 2, the main actors in TB care are described including their roles and responsibilities. This may include roles that these actors do not yet execute, but that are recommended for patient care and treatment outcomes.

Chapter 3 describes the patient-centred care approach. The initial step is an intake interview, where an integrated care coordinator assesses the needs of the patient as well as the risks that may lead to poor treatment outcome. The intake interview leads to the development of an individual care and support plan, which may consist of standard case management for people with few risks and uncomplicated disease; or of enhanced case management for people with more risks and/or complicated disease. The chapter also outlines the role of the integrated care coordinator and the multidisciplinary team that may be formed for the care of a patient with complex needs. The chapter includes the treatment delivery options, directly or video observed therapy and self-administered treatment, and several treatment support interventions that facilitate the patient’s adherence to treatment. Finally, the chapter outlines what actions to take in case of non-adherence and contact investigation.

The final chapter describes the challenges and needs for nine groups at risk of poor treatment, and the integrated care and support approach specific for these groups. The groups include Drug-resistant TB patients, People living with HIV, People with problematic alcohol use, People who use drugs, Homeless persons, Prisoners, People without health insurance, Children, and Labour migrants.


1 INTRODUCTION

Tuberculosis (TB) remains a significant public health problem in Lithuania and this applies to both drug susceptible (DS)-TB and drug resistant (DR)-TB. Whenever this guideline mentions TB patients or TB care services, this relates to both DS-TB and DR-TB. Where it is relevant, the guideline mentions the two entities separately.

1.1 Tuberculosis situation in Lithuania

Lithuania is among the 18 high-priority TB countries in the European region, which account together for 83% of Europe’s TB patients.1 Country data show that new TB notifications in the country reduced from 1,532 in 2011 to 1,116 in 2017, with a corresponding notification rate reduction from 51/100,000 to 39/100,000. 2 The estimate of the burden of TB for 2016 was 53 per 100,000 population, compared to 80 in 2007.1

From 2011 to 2017, an average of 261 (20%) of all notified TB patients were multi drug resistant (MDR), meaning resistant to at least isoniazid and rifampicin, two of the most important first-line TB medications. The World Health Organization (WHO) estimated that 47% of previously treated TB patients may have DR-TB, 1 and the country reported more than 20% of the TB patients having received treatment before. Of the MDR-TB patients, an increasing proportion has extensive drug-resistant TB (XDR-TB): from 52 patients (18% of MDR-TB patients) in 2011 to 87 (35% of MDR-TB patients) in 2017. XDR-TB is a form of TB where the bacteria is resistant to isoniazid, rifampicin, plus any fluoroquinolone, and at least one second-line injectable drug.

Treatment outcomes are rather poor in the country with only 68% of all notified TB patients successfully treated in 2015.1 Among the new and relapse TB patients the treatment success rate was 79%, but for MDR- and XDR-TB patients initiated on treatment, only 12% were treated successfully in 2014.1 Prisoners form a group with high risk of non-completion of treatment: only 31% of those released while still on TB treatment, completed their treatment successfully in 2016.2

Lithuania reports a rate of new Human Immunodeficiency Virus (HIV) infections below the WHO European’s average however, this rate is increasing from 5.4 per 100,000 in 2011 to 7.4 per 100,000 in 2016. 3 The main route of acquiring HIV-infection is injecting drug use and one-third of the infections in 2017 were acquired in prison. 2 Since the start of the reporting in the nineteen eighties until the end of 2017, the country diagnosed cumulatively 3,012 people with HIV of which 80% are men. Approximately one third of the people living with HIV (PLHIV) receive antiretroviral therapy (ART).

In 2017, 81% of TB patients knew their HIV-status and 3% of patients were also HIV-infected. 2 The number of co-infected patients is increasing from 22 in 2011 to 42 in 2017. However, TB was an AIDS defining illness for more than 50% of co-infected patients in 2017. Treatment outcomes for DS-TB is poorer for HIV-infected TB patients. Co-infected patients have more frequently DR-TB, though their DR-TB treatment outcomes are equally poor compared to those DR-TB patients not infected with HIV: for the period 2012-2014 the treatment success rate was respectively 38% and 36%.

People from certain groups have a higher risk to get infected with TB and subsequently develop the disease. 4 Those groups have not only a higher risk of TB infection and disease, but also of an unfavourable treatment outcome. In Lithuania, a substantial proportion of the TB patients belongs to such risk groups. Based on the National TB registry data, 31% of all new TB patients used alcohol problematically, 2% used illegal drugs, 3% were homeless and 5% prisoners in 2017. In addition to these risk factors, 75% of the TB patients were unemployed, which may further complicate diagnosis and treatment.

The current global Strategy to END TB that guides global efforts to reduce and eventually eliminate the disease, makes great emphasis on patient-centred care.5 The TB situation shows that TB patients may benefit substantially


from a patient-centred care approach which may include integration of health and non-health services. This guideline outlines the roles and responsibilities of different institutions in patient-centred care. This guideline focuses on the inter-sectoral collaboration in organising the best TB care, including DR-TB care, for people co-infected with HIV and for vulnerable and at-risk groups.

1.2 The Lithuanian health system

The government provides health care services through the municipalities, public and private inpatient and outpatient health care institutions. The National Health Insurance Fund (NHIF) is the main funder of health care services. The NHIF receives funding through obligatory, mainly employment-based, contributions. People who have a health insurance or a social guarantees package, which includes free health insurance, are tested and treated for TB for free. People without a health insurance or a social guarantees package, can have their TB treatment paid for on the basis of a confirmed diagnosis only. Health care services provided to people in the prison system are funded from the State budget, but not the NHIF. The Ministry of Health (MoH) formulates health policy, sets standards and requirements, licenses providers and health professionals, and approves capital investments. The MoH, together with local authorities, runs health care facilities and is co-manager of the two major hospitals at Vilnius University and the Lithuanian University of Health Sciences. The MoH governs the NHIF and is also responsible for the National Public Health Centre (NPHC), which itself is responsible for 10 county departments with local branches. An important role of the Centre in TB care and prevention relevant to this guideline, is to conduct contact investigation and health promotion.

Municipalities are responsible for organising the provision of primary health care and social care, as well as some public health activities. They also own some primary care centres, DOTS rooms, the majority of polyclinics and small-to-medium sized hospitals.

The private sector is very limited in providing inpatient care, but plays a substantial role in other areas, such as primary and dental care. The NHIF is increasingly contracting private providers for specialist inpatient (or ambulatory) care.

The NHIF provides coverage for a very broadly defined benefits package. Spending on pharmaceuticals forms the largest share of out-of-pocket payments, as patients pay the full cost of both prescribed and over-the-counter inpatient medications, unless they belong to exempted groups eligible for full or partial reimbursement (e.g. children, elderly, registered disabled and patients with certain disease including HIV, TB, cancers and some chronic disease). Other out-of-pocket payments relate to direct payments for services not covered by the NHIF and specialists visits without referral.

Primary care can be provided in either municipality administered or private settings, through family doctors or primary care teams. Primary care providers function as gatekeepers to the remainder of the health care system.

Specialist outpatient care is delivered through the outpatient departments of hospitals or polyclinics, as well as through private providers. Patients need a family doctor referral to access specialist services for free. However, direct access can be obtained through out-of-pocket payment.

Primary health care facilities, mental health centres, psychiatric clinics and private centres provide services for people with addition disorders. Some facilities offer both inpatient and outpatient services. In addition, several low threshold centres, also called harm reduction centres, offer needle exchange and limited testing for HIV and hepatitis.

1.3 Rationale for the guideline

The World Health Assembly approved the Strategy to END TB in 2014, a strategy covering the period 2015-2035, which strives to end the global TB epidemic.5 Providing integrated patient-centred TB care is the first pillar of the Global End TB Strategy, it is supported by the other two pillars, bold policies and supportive systems and intensified


research and innovation. The Strategy to END TB led to the development of the Global Plan to End TB, 6 and the WHO European region developed the TB action plan 2016-20207 and the Roadmap to implement the TB action plan 2016-2020.8 Through these strategies and plans, Member States, including Lithuania, committed themselves to interventions and activities based on the three pillars of the Global Strategy. The European Region roadmap includes several activities regarding integrated patient-centred TB care:

1. Activity 1C.2: Member States will develop a plan for achieving universal access to treatment, including the treatment of vulnerable populations and children, and uninterrupted drug supply (ongoing activity).

2. Activity 1C.6: All high-priority countries will specify strategies and mechanisms for ensuring people-centred TB services and expanding and maintaining the provision of ambulatory treatment integrated into different levels and settings of service delivery (by 2016).

3. Activity 1C.7: All Member States will specify strategies and mechanisms for patient-centred support to TB patients and their families to enable effective treatment adherence and completion (by 2016).

4. Activity 1C.9: Member States will improve access to TB prevention and care and appropriate support for hard-to-reach and vulnerable populations (by 2018).

5. Activity 2A.3: Member States will ensure universal coverage of TB services through the provision of a full range of high quality TB prevention, diagnosis, treatment and care, free of charge and with equitable access to all in need, especially the most vulnerable populations (by 2020).

1.4 Target audience for the guideline

This guideline describes the roles and responsibilities of many organisations and professionals involved in care for TB patients and addresses a large audience. The target audience includes health care professionals at the primary health care and at the hospital level, including the Directly Observed Therapy Short Course (DOTS) rooms and the penitentiary institutions; professionals in addiction services and staff working with people who use drug or have problematic alcohol use; public health professionals responsible for the prevention of TB including contact investigation; municipalities and their authorities responsible for the organisation of health care and social care services; social care professionals who may have a role in support for TB patients; civil society organisations, and patients organisations that may work with individuals who have TB; staff in homeless shelters; non-health care staff of the prison hospital.

1.5 Development process of this guideline

This guideline was developed through a participative and consultative approach. Two international consultants conducted an information gathering visit in June 2018. They met with a large variety of national stakeholders relevant to the care for TB, DR-TB and HIV patients. The representative from the MoH selected the stakeholders together with the consultants based on the identified risk groups in TB. The stakeholders included:

- Ministry of Health, Ministry of Social Security and Labour

- Health care professionals, including from the central prison hospital

- National Health Insurance Fund

- National Public Health Centre

- Republican Centre for Addictive Disorders

- Vilnius and Ukmergė municipalities

- Vilnius DOTS centre

- Homeless shelter


- Civil society: Caritas, an organisation working with homeless people, and DEMETRA, an organisation providing harm reduction services

- Centre for Communicable Disease and AIDS

After the visit, the consultants then developed a first draft of the guideline based on the information provided by Lithuanian stakeholders and international guidance documents. The stakeholders reviewed the first draft, the consultants developed a second draft, that ECDC reviewed. The consultants incorporated suggestions from ECDC into a third draft.

During a consensus building meeting in Lithuania in October 2018 with stakeholders, many of whom were consulted during the information gathering visit, this third version of the guideline was discussed and a consensus on the content reached. The consultants included the suggested changes into the final version that was reviewed by ECDC and Lithuanian counterparts. The MoH will organise the translation of the final version of the guideline into Lithuanian.


2 INTEGRATED TB CARE PROVISION – ROLES AND RESPONSIBILITIES

Several actors play a role in TB care provision and below their roles and responsibilities are described together with mechanisms to link these actors to TB care provision to the benefit of the TB patient. This chapter contains current roles and responsibilities as well as recommended roles and responsibilities where these differ from the current situation.

2.1 Actors in TB care provision and their roles and responsibilities

Person with TB symptoms or TB patient

A person with symptoms usually enters the health system through the family doctor, who can refer the person to specialist services. The NHIF covers the costs for specialist care when the person has a referral, although direct access is possible for urgent care. People require registration with a family doctor to receive the care offered by family doctors free of charge.

In addition, the family doctor is responsible for testing risk groups for TB, which include (Order of the Minister of Health 2016-06-23 No. V-837):

- Periodically, at least once a year, a chest X-ray (CXR) should be performed for people who are HIV positive, addicted to alcohol or drugs, imprisoned, who are living in collectives (for example, custody homes), who have certain diseases or health conditions;

- Periodically, at least once a year for the first 5 years after entrance into the country, a CXR should be performed for people coming from countries with high TB incidence;

- Annually a CXR should be performed for people who are working in children education institutions, in food production, in healthcare, in production and sale of toys, or in resident and institutions providing community services (services provided to the residents at social and nursing institutions, shelters, day care institutions, social care institutions, rehabilitation institutions, hotels, motels; services at saunas, swimming pools, solariums; services such as hairdressing, shaving, manicure, pedicure and body cosmetics).

- Tuberculin skin tests should be prescribed for 7-year old children once, and annually for children belonging to risk groups (Order of the Minister of Health 2002-08-06 No. V-399).

When a person is diagnosed with smear positive TB or has a positive culture or X-pert test, hospital admission usually occurs. It is possible to start treatment on an ambulatory basis at the DOTS room. All municipalities should establish DOTS rooms, however, not all do have them in place. If the TB patient prefers to continue TB treatment at the family doctor, the patient needs to write a request to express this wish and at the family doctor practice, a temporarily DOTS room can be established.

HIV-positive persons receive information about TB through educational materials at medical and social service locations. These materials encourage the person to visit a family doctor in case of respiratory or other symptoms. From 1 June 2018, people newly diagnosed with HIV-infection have an Interferon Gamma Release Assay (IGRA) test as part of the assessment for active TB or latent TB infection (LTBI). PLHIV with LTBI do not receive LTBI treatment.

The NHIF covers treatment for people diagnosed with HIV and persons diagnosed with TB, however, for the uninsured, the diagnostic process for these diseases is not covered. This poses problems for people without a health insurance, which occurs regularly in homeless people, people using drugs or people with problematic alcohol use. These groups need proof that they do not suffer from TB to receive long term admission to homeless shelters. The need to pay for the diagnostic test (CXR) often serves as a barrier to access the services. For those who want to stay (long term) at the municipality homeless shelter, CXR is paid by the municipality.


In case a person with TB symptoms visits a family doctor, the family doctor can request a CXR. Based on the symptoms and the findings of the CXR, the family doctor refers the person to a pulmonary specialist. The NHIF covers this pulmonologist consultation. The pulmonologist does further TB diagnostic and confirmatory tests, and upon confirming the TB diagnosis, refers the patient for admission to a hospital. After the inpatient period, the family doctor receives a letter of discharge. The TB patient continues TB treatment at a DOTS room, which may be at the family doctor practice. At least once in two months, the patient visits the pulmonologist for medical follow-up of treatment with bacteriological and other tests.

Currently, a family doctor cannot request an HIV-test covered under NHIF, though there are plans to make HIV-testing available through family doctors.

Pulmonologist

Pulmonologists usually work at the secondary level in a hospital for both in- and outpatient care and provide also some care services at a municipal health facility at the primary care level. They receive referrals from family doctors of people that have symptoms that may be TB or a CXR suggestive of TB. Pulmonologists continue the diagnostic process, and when they diagnose TB, they usually refer the patients to TB hospitals to initiate treatment. Incidentally, a patient may start treatment on an ambulatory basis, however, that is rare especially with bacteriologically confirmed TB. The MoH’s Action Plan for reducing health inequalities in Lithuania states that “Patients should be hospitalised as long as they expel Mycobacterium tuberculosis and most of them can continue their medical treatment in outpatient settings once M. tuberculosis is no longer present”.9

Upon discharge from the hospital, the pulmonologist informs the family doctor and the DOTS room in the municipality where the patient resides that the patient will continue treatment in an ambulatory setting. The pulmonologist does not follow-up actively whether indeed the patient presents for treatment continuation but is informed by the DOTS nurse. However, the pulmonologist remains responsible for medical follow-up until the end of treatment (Order of the Minister of Health 2016-02-12 No. V-237).

Infectious Disease Specialist for HIV care and treatment

Although all infectious diseases and internal medicine specialists could provide care for HIV infected people, the care provision is mainly done by infectious disease specialists in five centres, evenly distributed throughout the country. Only the specialists, not the family doctors, can order screening tests for HIV, hepatitis and sexually transmitted infections covered under NHIF. Since early 2018, the country follows a treat-all policy and offers ART to all HIV-infected individuals (Order of the Minister of Health 2010-05-03 No. V-384, last revision in 2018). Infectious disease specialists providing HIV care run their clinics mostly in the same hospitals as the TB pulmonologists do, but comprehensive integrated HIV/TB care is not working well in some health care facilities. All TB patients should be tested for HIV (Order of the Minister of Health 2008-04-30 No. V-374) and all HIV positive cases should be tested for active TB annually (Order of the Minister of Health 2016-06-23 No. V-837), and in case of certain clinical indications (Order of the Minister of Health 2010-05-03 No. V-384, last revision in 2018). Usually the pulmonologists arrange the HIV testing of TB patients, although any doctor or nurse from the health care institution providing TB or pulmonology health care services for children or adults can arrange the test.

Recommendation: Consider a one stop model for co-infected patients where all, or at least as many as possible, services are provided by the same person or in the same location.

TB Hospital

Usually bacteriological confirmed TB patients, whether by smear microscopy, culture or molecular test, start their TB treatment in hospital, where they should remain until they no longer expel the TB bacilli (Order of the Minister of Health 2016-06-23 No. V-837 and 2000-01-21 No.39). In the hospital, the patient receives the necessary care and the


treating pulmonologist can consult other specialists or refer patient to them on a needs basis. The NHIF covers the costs of all the in-patient care.

The TB hospital Alytus deserves special mentioning because it is the hospital where mandatory isolation occurs. If a patient with active TB disease does not adhere to the prescribed treatment or violates the internal rules of the health care facility where he/she is hospitalized and poses a threat to other people, the municipality may request mandatory isolation. The municipality has to follow a certain procedure on the basis of which a court will decide on the mandatory isolation. It is possible to initiate the mandatory isolation process for both in- and outpatients. The legal basis for mandatory isolation is the Law on Human Communicable Disease Prevention and Control and Order of the Minister of Health 2002-06-06 No.258.

Social worker based in hospital

Hospitals may have social workers, who form part of the treatment team in the hospitals if necessary. The role of the social worker is to support the patient, for example with organisation of paperwork, and provide counselling. There is no formal link between hospital based social services and community based social serves. Social care is regulated in the order of the Minister of Health and Minister of Social affairs and Labour (1999-10-06 No 432/77, last revision in 2002).

Recommendation: Social care services in hospitals are not routinely implemented, and need to be strengthened. In addition, a handover from hospital based social care services to the social care services provided in the ambulatory setting or the municipality, where they are available, would help the patient and guarantee continuation of such services.

DOTS room

The legal basis for provision of DOTS is Order of the Minister of Health 2016-02-12 No. V-237. The Action Plan for reducing health inequalities describes requirements of the DOTS location and for its staffing. The DOTS room nurse receives information on a patient who will receive DOT from the pulmonologist, and reports back to the pulmonologist and the family doctor in case the patient does not come for his/her medication. The patient comes to the DOTS room daily on work days and s/he receives the weekend medication on Friday. Current support available for patients consists of transportation cards and food vouchers, which the patient receives if not missing more than a certain number of appointments. This support is the responsibility of the municipalities and can be provided from the municipality’s budget or (currently) through the European Union funded project.

A pulmonologist prescribes medication needed to avoid or treat side effects; however, this treatment/medicine is not compensated by NHIF. Currently, DOTS nurses are not allowed to prescribe medication.

If a patient does not come for DOT, the DOT nurse gets in touch with the patient to inquire about the reason. If non-adherence continues, the nurse reports this to the treating pulmonologist and family doctor.

The DOTS room nurse only has formal links with the family doctor and treating pulmonologists but not with social care or other primary care services. Although the nurse cannot prescribe medicine, (s)he may advise patients on medication available without a prescription, such as pain medication.

Recommendation: Because many TB patients have social issues, it may help them if the DOTS room nurse can refer the patient to social care services. Obviously, the nurse would need to request permission from the patient to do this referral. Alternatively, social care workers could be part of the team of staff at DOTS rooms, so that engaging social care is easier.

Prison Hospital


TB screening is performed periodically to people while they are in the prison system. A CXR is performed every time a person is admitted to the remand prison or is transported from the arrest house to the Prison hospital or yearly (if CXR has not been performed because of the other reasons) (Order of the Minister of Health and Minister of Justice 02-07-2002 No. 343/191).

Prisoners diagnosed with TB are admitted to the prison hospital, where they will usually stay until the end of treatment unless their custodial sentence terminates earlier. Care and treatment for TB patients in the prison hospital is the same as outside the prison, except for the availability of the new and repurposed TB drugs which are currently not available in prison hospitals. As it was mentioned before, the care of TB in prisoners is paid from the government budget and not by the NHIF, covering these costs by NHIF is under discussion.

Upon discharge from the prison hospital the prison pulmonologist informs the family doctor/pulmonologist who will continue the treatment of the patient, usually in the municipality where the patient resided before entering the prison. There is no formal verification whether the patient arrives to continue TB treatment.

Prison health care staff inform the municipality doctor according to the place of residence of the person who has TB and provide information to the Tuberculosis State Information System about persons who started the course of TB treatment in prison but failed to complete due to the decision of release of the court.

Recommendation: The prison in collaboration with the civil health care system should establish a mechanism to verify whether patients continue treatment outside the prison in order to identify as early as possible patients that do not present for treatment continuation.

National Public Health Centre

The pulmonologist who diagnoses smear positive TB, has an obligation to inform the NPHC (Order of the Minister of Health 2002-12-24 No. 673 and 2016-06-23 No. V-837). In case of a patient with pulmonary TB, the NPHC conducts contact investigation and should inform the contacts of the index patient as soon as possible. Contacts have to visit family doctor within one month after receiving a prescription from NPHC specialists. Adult contacts will have CXR to detect active disease, and children a tuberculin skin test.

The NPHC also educates TB patients on the disease, its treatment and side effects and the importance of adherence to treatment. This is a new activity funded through the European Union. This takes place during the ambulatory phase in the DOTS room or the family doctor practice.

Municipalities

Municipalities are responsible for organization of social care services and health care services for people living in the area of the municipality. In TB care, the municipalities are responsible for establishing the DOTS room. Municipalities can support diagnosis in people without health insurance. The Law on health care system obliges municipalities to support the health care in their territories and to provide additional funds (e.g. for services not provided within NHIF). The municipalities decide themselves what to fund additionally.

Funding for social care services in the community comes from the municipalities. The municipalities provide social services or give the monetary social support for people in need. Municipalities decide themselves on the procedures and the criteria for the provision of monetary social support. Municipalities also are responsible for organization of social services for the homeless people and run the homeless shelter itself or buy such services / provide grants to the institutions, such as other public institutions, NGOs, charity and support funds.

Recommendation: The role of the municipalities in TB care could be strengthened by establishing and funding mechanisms for diagnosis in people without healthcare insurance and to ensure the availability of a DOTS room if there is need for one.


Social care (community based)

The social workers do not formally have a role in TB care. There is no formal link between social care service in and outside the hospital, neither is there a formal link with ambulatory TB care. However, social workers are often involved with people at higher risk for TB or at higher risk for poor treatment outcome such as homeless people and people with addiction problems, are knowledgeable about the services available for these groups and about the allowances available for the uninsured, and could as such be good actors in TB care.

Recommendation: Municipalities should allow social workers to be included in the care plan for TB patients and be part of multidisciplinary teams if the need arises or when such engagement in the care for the TB patient is advised by the TB treatment staff.

PHC Psychology services

All Lithuanians can access the primary health care psychology services. These services do not formally have a role in TB care, however, people on TB treatment, certainly those from risk groups, may benefit from their services.

Centre for Addictive disorders

The Centre for Addictive Disorders does not have a formal role in TB care. People that want to stay long term (up to 28 days) in the centre’s inpatient facility are asked to have a ‘TB-free’ declaration if the patient has TB compatible symptoms. Many TB patients do have problems with alcohol or illicit substance use and some link between the two services may benefit the patients. Only psychiatrists can diagnose an addiction disorder.

Homeless shelter

Shelter for homeless can be offered by the municipality itself or by different institutions, such as public institutions, NGOs, charity and support funds. There is no formal link between TB care and homeless services. People that want to stay long term in a shelter, need to have a ‘TB-free’ declaration, and have to provide this declaration each year when in long stay. This may pose a challenge if uninsured for healthcare. However, the declaration is covered by the municipality if the person stays at the municipal homeless shelters. The shelter’s social worker or health care staff can facilitate their residents’ visits to a family doctor, or accompany them to a policlinic. The shelter’s health care personnel do not provide treatment or medical services, beyond advice on, for example, personal hygiene.

Low threshold centre

The low threshold centres do not formally have a role in TB care, however, people who use drugs and have TB may come to the centre for harm reduction services.

Recommendation: if a TB patient also attends a low threshold centre, the centre could act as the place to provide DOT, if the TB patient allows.

Non-governmental organisations

No NGO has a formal role in TB care, but some NGOs work with risk groups that have TB more frequently, including those with no health insurance. It may include NGOs working with social risk families, providing services to youth and children living in closed settings, working with ex-prisoners, and people who inject drugs.

Demetra is one of the leading harm reduction organisations providing low threshold services in Vilnius and Klaipėda, with more than 1,000 clients, providing needle exchange and support to people who use drugs. Caritas runs a


homeless night shelter and a day-centre and a soup kitchen, where they provide activities for their clients. If someone presents symptoms that need medical attention, they encourage them to attend to the family doctor.

Recommendation: if a TB patient also attends services of an NGO, the location could act as the place to provide DOT, if the TB patients allows.

Centre for Communicable Diseases and AIDS

Centre for Communicable Diseases and AIDS (CCDA) is the public health authority and responsible for communicable disease (including HIV surveillance) at the national level. CCDA manages the State Information System for Communicable Diseases and their agents. Pursuant to national law, 82 communicable diseases (including TB, HIV) are designated as mandatory notifiable in Lithuania. The Centre also monitors tuberculin skin test and BCG vaccination coverage, performs ART monitoring and provides trainings for health professionals, amongst other tasks. In addition, CCDA is the national contact point providing information to the European Surveillance System (TESSy) at ECDC, to the United Nations Information System, to the Centralized Information System for Infectious Diseases (CISID) of the World Health Organization and is responsible for the Early Warning and Response System (EWRS). EWRS is a tool of the European Union for monitoring public health threats within its territory with restricted access, and the main tool for information exchange on communicable diseases cases, outbreaks or threats. This includes information on TB patients or TB contacts for e.g. labour migrants. In these circumstances, confidential information is provided to the relevant public health authority. This information may include personal information such as name and address, age, contact numbers, details of travel, and persons contacted.

The Centre for Communicable Diseases and AIDS provides methodological assistance to NPHC and PHCI conducting surveillance and control of communicable diseases including TB (if needed).

Other actors in TB care

There are three Ministries relevant for TB care: the MoH is responsible for health policy, licences for providers and health professionals; the Ministry of Justice is responsible for the prison sector; and the Ministry of Social Security and Labour is responsible for the social care policy.

There are no permanent inter-ministerial working groups, meetings involving different stakeholders are organized on a need basis. The Health Minister approved the terms of reference and composition of the TB commission (representing health care sector) in December 2017. The role of the Commission is to discuss questions related to TB treatment and control; to follow TB related epidemiological data; to assess TB legislation and offer needed changes and to provide suggestions of the actions needed to the Minister. The members of the commission are from the MoH, NPHC, Centre for Communicable Disease and AIDS, representatives from three TB hospitals, including two TB laboratories, two infectious disease specialists working with children, TB specialists, and representative of the municipalities. The commission meets at least once per quarter, but may meet more often if necessary. The minutes of the meetings are kept.

Recommendation: The TB Commission should invite other actors to join or attend on a needs basis, which is potentially relevant for integrated care services for prisoners, and for linking TB services with social care services.

-


3 PERSON-CENTRED CARE

This chapter is based on the ‘Guidelines for treatment of drug-susceptible tuberculosis and patient care’ 10 unless otherwise referenced. The TB services provided in Lithuania have a rather service-centred approach. This guideline recommends the country to move towards a person-centred approach.

Person-centred approach to TB care, also known as patient-centred approach considers the needs, perspectives and individual experiences of people affected by TB.11 A person-centred approach includes empowering the patients to make decisions that affect them jointly with the (health) care providers and take part in managing their own care. 12 Based on human rights, the person-centred approach includes providing TB patients with information, ensuring confidentiality, helping the patients overcome social and economic barriers, and countering stigma and discrimination. Under the person-centred approach, “care delivery is as close and as conveniently available to the individual as is safe and cost–effective”.13

To be able to address the patient’s needs, an assessment prior to or soon after starting TB treatment identifies the patient’s needs for support as well as the risks for poor treatment outcome. To achieve the best possible treatment outcome, the assessment results in offering the patient interventions to encourage adherence and completion of treatment.14

3.1 Integrated care coordinator and multi-disciplinary team

The outline of the actors involved in provision of TB care in the country is detailed in the previous chapter. Actors are either directly involved because the actor is a TB care provider, or indirectly, because the TB patient also receives other services. Thus, several providers may be involved and there is therefore a need for collaboration between the actors to ensure quality TB services until the end of treatment. Also within the health sector active collaboration is important to improve care and treatment outcomes. An example is a pro-active follow-up after discharge from the hospital to ensure that the patient continues treatment in the community.

Engaging non-clinical professionals such as social care workers can facilitate the coordination of services for a patient leading to improved treatment outcome.4 The engagement of other actors may require more coordination and a team approach, in which specialists from different disciplines work together to achieve the best result for the TB patient.

3.1.1 Integrated tuberculosis care coordinator

The international standards for tuberculosis care describe in standard 7 that the healthcare provider treating TB has to fulfil a public health responsibility as well as a responsibility to the individual patient. 14 The European Union version of these standards is more explicit and states that ‘the practitioner must not only prescribe an appropriate regimen, but also utilise local public and/or community health services, agencies and resources when necessary, to perform contact investigation, to assess adherence of the patient and to address poor adherence when it occurs.’ 15 A recent study on patient support in Europe showed that organizing patient support through a tuberculosis coordinator was among the potential best practices.16

An integrated TB care coordinator, in some places called a case manager,17 is a person coordinating the care for a patient with TB. The care coordinator must have a good overview of the actors in the TB care field and be capable of reaching out to care providers should the needs of the patient require that.

International consensus on the roles and responsibilities for the integrated care coordinator does not exist. Within the context of Lithuania, this guideline recommends the following roles and responsibilities:

- Ensure that an assessment is done at the beginning of TB treatment to identify the needs of the patient and the potential risks for poor adherence


- Ensure an individual care plan is made for each patient

- Ensure that the patient receives adequate education on the condition, its treatment and related issues; adequate means here that the language used for the education is understandable to the patient, i.e. too much medical terms avoided

- Ensure that TB treatment, and possibly treatment of other medical conditions, is integrated and provided in a patient-centred way

- Ensure that the patient links up with community treatment when discharged from hospital or prison

- Ensure that continuation of the prescribed TB treatment is available for the patient in case of incarceration

- Ensure that the patient adheres to treatment and to the medical follow-up

- Ensure that the patient receives social support services as needed and as possible.

Each patient should have an integrated care coordinator, and the process of assessment of the patient’s needs and risk should start as soon as possible after diagnosis, whether in the hospital, prison or in the ambulatory care setting. Ideally, the integrated care manager remains the same person throughout treatment, although in some situations that may not be possible, for example in the prison setting.

Persons best placed to serve as integrated care managers are social care workers, public health specialists and TB nurses, though this may vary across municipalities.

3.1.2 Multi- or interdisciplinary team

The pulmonologist is responsible for the medical treatment of patients with TB. However, the assessment of the patient’s situation may reveal a complexity of the patient’s circumstances that require other expertise to optimally treat the patient. This may include other medical specialists for the treatment of co-morbidities such as HIV-infection but could also mean the involvement of social care workers to address non-medical needs of the patient adequately.

The team approach ensures that patients’ care is organised around the patient rather than around providers. When in the hospital, members of the team visit the patient in the patient’s room if possible. In the ambulatory phase of treatment, a one-stop service delivery for TB and other services can be considered. This one-stop service can be provided next to TB care services for people who use drugs or have problematic alcohol use.

Although the team approach is built around the patient, is does not mean that all the patient’s needs can be addressed fully nor that all service delivery is fully tailored to the patient, as the team needs to operate within the existing possibilities. However, the team approach ensures that all team members are aware of the patient’s situation and condition and have optimal treatment as a goal.

The multidisciplinary team should include the treating pulmonologist and the integrated care coordinator. Further members depend on the patient’s situation and may include: social care workers from municipal services or from NGOs; staff working with people who use drugs or have problematic alcohol use; staff of homeless shelters; medical specialists such as infectious disease specialists, psychiatrists; DOTS nurses; and staff of the local office of the NPHC. Other members may be invited when the need arises.

The integrated care coordinator is the first point of contact for the patient and coordinates the activities of the team and should have all relevant information. If necessary, for example if the patient is non-adherent, the team may hold a meeting or a call to discuss the situation and decide on the best possible way to address the non-adherence. If the patient is willing, s/he may join the discussion to actively engage in her/his own treatment and take responsibility for it.


3.2 Intake Interview

In addition to the ‘Guidelines for treatment of drug-susceptible tuberculosis and patient care’ 10, this section is also based on the ‘Tuberculosis case management and cohort review: guidance for health professionals’ 17 unless otherwise referenced.

Soon after the start of treatment, or even prior to the start, the integrated care coordinator (see section 3.1.1) should have an intake interview with the patient. A good moment is when the patient receives the diagnosis, but if for some reason this is not feasible then the intake interview should take place as soon as possible. The objectives of this initial interview are to:

- support the patient emotionally

- start building a relationship of trust and partnership

- educate the patient about TB

- ensure the patient knows her/his rights and responsibilities

- identify the barriers to successful treatment completion, and to

- initiate contact investigation as appropriate.

Because the interview covers a lot of topics, it may take up to 30-40 minutes, or even more at times. The location of the interview depends on where the patient is. A medical facility or a community setting, e.g. a shelter, serve as adequate locations. The location should allow for a private conversation and should have adequate infection control precautions. Both patient and interviewer should comply with infection control precautions. If the patient’s condition does not allow a full assessment in one session, then it is better to complete the initial assessment in several sessions. It may also apply if there are lots of issues to cover. The aim remains to complete the assessment as soon as possible after diagnosis.

Also, people diagnosed with latent TB infection, and especially those who start preventive treatment, should have an intake interview.

Supporting the patient

At the moment of receiving the diagnosis, the patient may be in a particularly vulnerable state of shock or disbelief. There may still be uncertainties related to the drug resistance status of the disease and results of (further) drug susceptibility testing may not yet be available. It is important that the health care provider supports the patient emotionally, shows calmness and empathy, and has a non-blaming attitude.

Relationship Building

A relationship between the patient and health care provider based on trust “can help to overcome significant barriers to adherence”.18 The intake interview is an excellent opportunity to start building this relationship of trust between the patient and the integrated care coordinator by showing confidence, speaking clearly and validating the patient’s fears or concerns. The interviewer should allow the patient to ask questions and maintain confidentiality at all times.

An attitude of mutual respect between patient and provider in a patient-centred approach is crucial to encourage adherence. An understanding, compassionate and supportive attitude from the provider facilitates adherence.

Education about TB


Education about TB should start already before the diagnosis, by offering the presumptive TB patient information about TB symptoms and the disease, the tests they have to undergo, the need for follow up, and general information about tuberculosis treatment.

Once diagnosed, further education of TB patients about TB will occur, usually through various sessions. The purpose of education and counselling is to enable patients to understand what the disease means for them, support them in coping with the disease and support them in taking personal decisions related to TB disease and treatment. Education should focus on providing patients and their families with an understanding about TB transmission, symptoms of TB, and tuberculosis treatment; the importance of treatment adherence and of contact investigation; and the rights and responsibilities of TB patients.

Important during the intake interview is to:

- provide the right amount of information – enough to make informed choices but not so much to overload the patient

- give the information that the patient needs on

o treatment regimen and duration

o what medicines the patient will take (names, dosages, how to take them)

o adverse drug reactions and what actions to take in case these arise

o importance of adherence and nutrition

o infectiousness and infection control

- help the patient see what the information means to them

- ask what further information the patient would like to have at this point

- provide available written information and

- reply as much as possible to questions the patient may have.

Patients’ rights and responsibilities

The Patients’ Charter for Tuberculosis Care clearly states that TB patients have the rights to care, dignity, information, choice, confidentiality/privacy, justice, organization and security.19 The patients’ responsibilities include sharing information, following treatment and contributing to public health. The Patients’ Charter helps to better inform patients about their rights and responsibilities. It helps to provide the patient with a copy of the charter in a language that s/he can read and understand.

Assessment of the barriers to successful treatment completion

Adherence definitions are not universal. In the most recent WHO treatment guidance adherence is defined as more than 90% of the medication taken when observed by another person. Factors influencing adherence to TB treatment include: economic and structural, patient-related, regimen complexity, and pattern of health care delivery. 18 During the intake interview, the interviewer collects information about:

- economic and structural factors

o financial conditions (employed; self-employed; receiving benefits; other)

o nutrition (assess need for food voucher)

o living conditions (urgent housing problem needing action; housing problem not needing action; no housing problem)


o mobility and transportation (assess need for wheel-chair access and/or transportation card)

o availability of support (from family, neighbours, friends, colleagues)

o any current support provided by social workers or NGOs

- other patient-related factors

o drug use

o problematic alcohol consumption

o mental health issues

o homelessness

o history of incarceration.

The information is recorded in the patient individual care and support plan (see 3.3). The draft plan is developed by the integrated care coordinator after the intake interview.

Contact investigation

At the intake interview, the interviewer will explain the importance of contact investigation and the procedure. The interviewer makes clear that the patient’s privacy and confidentiality will be maintained. Patients usually want to prevent that others with whom they were in close contact, will suffer from the same disease, which serves as motivation to collaborate. If time allows, the integrated care coordinator and the patient together make an initial list of the close contacts, including names, demographic details, contact information, exposure history and any known factors for increased risk of TB disease, such as HIV, diabetes and malnutrition. If the initial interview is not the best moment to collect this information, the interviewer makes arrangements to obtain this information later, ideally as soon as possible. Section 3.7 contains more information on contact investigation.

3.3 Individual care and support plan

The initial interview should result in an individual care and support plan. The person best placed to develop the plan is the integrated care coordinator. This section contains a general description of this plan, and the remainder of this guideline include more targeted interventions for specific groups.

The individual care and support plan is straightforward for patients whose medical and social situation is not complex. When more complexity surrounds the patient, either medically as in DR-TB or when co-morbidities are present, or socially because of homelessness or problematic alcohol use, the plan becomes more complex as well. The plan should contain the following information:

- Date, if applicable dates of the plan’s revisions

- Patient details: name, address and phone number

- Provider details: name and phone number of the treating pulmonologist, names and phone numbers of other specialists involved in the treatment

- Integrated care coordinator: name and phone number

- DOT arrangements: location, DOT provider, other details if relevant

- Disease details such as type of TB, regimen used, date started treatment

- Existence of co-morbidities

- Description of the social situation: employment status, housing situation, living with others (family, friends) or alone


- Existing risks for poor treatment outcome: complex disease/co-morbidities, problematic alcohol use, use of drugs, homelessness

- Actions to mitigate the risks identified: the interventions offered differ per patient; the next chapter contains more details on the possible options

- Any other relevant information

- Signatures of the integrated care coordinator and the patient showing that both agree with the plan.

All staff involved in the care for the TB patient should maintain confidentiality of patient information. This is even more relevant when non-healthcare staff become involved in the care. Staff should adhere to existing legislation and obtain permission from the patient in case of referral to other healthcare and non-healthcare services. If the legislation requires to obtain written permission of the patient, such procedures should be followed strictly and added to the individual care plan.

The integrated care coordinator develops the draft plan and finalises it jointly with the patient. A counter-signed copy of the plan remains with the integrated care coordinator, a copy is kept in the patient’s file and the patient receives a printed copy. The integrated care coordinator, together with the multidisciplinary team where indicated, should evaluate the plan to assess if the plan has the desired results, and adapt the plan if necessary. A good moment for evaluating the plan is after one month on treatment. Major changes, such as discharge from hospital, are additional moments to evaluate the plan and adapt if necessary.

Because hospitalisation occurs for most patients, the integrated care coordinator develops the first version of the plan in hospital. Before discharge, the care coordinator reviews the plan and updates if necessary. Significant change in the patient’s situation also requires a revision of the plan. Examples are a worsening of the clinical condition or becoming homeless.

The plan may result in standard case management for patients without risk factors for poor treatment outcome, and without complicated clinical disease or psychosocial situations.17 An alternative approach is enhanced case management, where the care coordinator with a multidisciplinary team provide expert clinical and psychosocial care.

3.4 Treatment administration options

In the intake interview, the care coordinator should discuss the options for the treatment administration with the patient and ask for the patient’s preference. In hospital, the hospital staff will administer the medication but once in the community, a different arrangement is needed. This section describes the available options, though these are not yet all practised in the country.

3.4.1 Directly Observed Therapy

WHO defines DOT provider as any person observing the patient taking medications in real time. Anyone can observe the intake of the medication, as long as the person knows the procedure and records the intake. There is no clear evidence that DOT provided by health care workers has a better treatment outcome compared to DOT by non-health professionals. DOT includes delivering the prescribed medication, checking for adverse effects, watching the patient swallow the medication, completing a DOT log of medications observed, documenting the visit and answering questions.17 If incentives are available for patients, the DOT provider may deliver these as well.

The DOT location chosen is important and both patient and provider should feel safe at this location. Evidence shows that DOT provided in the community compared to in health-facilities results in better treatment outcomes. Provision of community-based DOT may be more efficiently organised when effective partnerships are established with allied health and social care services.17


In Lithuania, all DOTS rooms are based at a health facility. The patient comes to the DOTS room for the medication on work days and receives the doses for public holidays and weekend days to take at home. DOT nurses, the family doctor or the family doctor assistant see the patients, observe medication taking, discuss any problems they face with the treatment and record the DOT. Other potential DOT observers include trained non-clinical outreach workers, including social workers, former TB patients, staff working in homeless shelters, pharmacists, prison staff, staff working with former-prisoners, and staff working with people who use drugs or people with problematic alcohol use. For children and adolescents, the parent or guardian living in the same household is an alternative.

In situations when a TB patient refuses DOT, the integrated care manager needs to explore the reasons for the refusal and together with the patient find solutions acceptable for her/him. Through education, providing enablers and/or incentives, finding the most convenient time and location, the patient may accept DOT.

Homeless people, people with problematic alcohol use or using drugs may benefit from outreach services and/or mobile DOT where the DOT takes place in a location more convenient for them.

3.4.2 Video observed treatment

Video-observed treatment (VOT) uses modern communication technology such as smartphones or software which allows communication using the camera of laptops and/or phones. Both the patient and the DOT provider can initiate the communication and it allows more flexibility than traditional DOT. The process is similar to DOT, however, the people involved are not in the same location. The observation of swallowing of the medication, the communication on side effects, as well as the recording of the dose taken, are all the same as in the traditional DOT. The most recent WHO guidelines include this treatment delivery option in situations where it is possible even though there is little evidence to show its benefits.

VOT is not practised in Lithuania at present, but is a recommended alternative when it serves the patient’s needs better.

3.4.3 Self-administered treatment

Self-administered treatment occurs when the patient receives medication for a period of time and takes it unsupervised. Compared to DOT, self-administered treatment results in slightly worse treatment outcomes. Self-administration is the least preferred option but may serve well in addition to DOT and/or VOT for convenience purposes e.g. if a patient needs to travel for work or private reasons.

3.5 Adherence support interventions

Evidence exist that combining DOT or self-administered treatment with other adherence interventions improves treatment outcomes. Several adherence interventions are available and a combination of interventions may address the patient’s situation best. The individual care plan describes the risks and the interventions proposed to mitigate them. As mentioned before, WHO defines adherence as more than 90% of the medication taken when observed by another person.

Table 1 includes the adherence support interventions in the most recent WHO TB treatment guidelines.

Table 1 Description of treatment adherence options

Treatment adherence intervention Description

Patient education Health education and counselling

Staff education Educational, chart or visual reminder, educational tool and desktop aid for decision-making and reminder


Treatment adherence intervention Description

Material support Food or financial support such as meals, food baskets, food supplements, food vouchers, transport subsidies, living allowance, housing incentive or financial bonus

Psychological support Counselling sessions or peer-group support

Tracer Communication with the patient, including home visit or via mobile telephone communication such as Short Message Service (SMS) or telephone (voice) call

Digital medication monitor

A digital medication monitor - a device that can measure the time between openings of the pill box. The medication monitor can give audio reminders or send SMS to remind patient to take medication, along with recording when the pill box is opened

Patient education

Patients who receive education or educational counselling during their treatment have better outcomes. Patient education is part of the intake interview and should be continued throughout treatment when there is a need.

Patient education has different content during the course of treatment and will always allow the patient to ask questions. Table 2 includes a possible time schedule for the educational sessions.

Table 2 Timing of patient educational sessions (adapted from 20)

Timing of patient education

DS-TB ambulatory patients

DR-TB ambulatory patients DS- or DR-TB patients in hospital

At (1st) sputum collection Clear instructions on sputum collectionOn admission to hospital Not applicable Education on admissionJust before or at treatment initiation Intake interview

First week after treatment initiation

Education during home visit (or other location agreeable to patient) Not applicable

At treatment follow-up visits Follow-up educational session Not applicable

Before discharge from hospital

Not applicable

Education on arrangements after discharge

First week after discharge from hospital

Education during home visit (or other location agreeable to

patient)At treatment follow-up visits Follow-up educational session

Each visit to the DOTS room presents an opportunity to educate the patient and the DOT provider needs to be sensitive to the needs of the patient in this regard. Important topics for patient education at the start of the treatment include infectivity, treatment side effects, drugs interactions; important topics closer to the end of the treatment include TB and return to work/education, having children, and post-treatment monitoring.

Staff education

Staff training can take many forms and has shown to improve treatment outcomes. Possible forms are peer training, visual aids to help in the contact with the patient or to assist decision-making. Members of the multi-disciplinary teams, who may not all be medical professionals, may need a special education session on TB. An assessment of their current knowledge and skills to perform their tasks as members of the team is necessary, followed by an appropriate training session based on identified gaps.


Material support

Material support assists patients to cope with the indirect costs that they have in relation to their disease. Food support facilitates adherence to treatment, but also has a biological impact through reducing malnutrition and improvement of the immune function. Patients can be provided with food vouchers that they can use in supermarkets (though not for cigarettes and alcohol). This has been applied in Lithuania and although the municipalities did not systematically evaluate the intervention, the impression is that it does improve adherence. Patients that use public transportation to reach the DOTS location should also be provided with transport vouchers to enable them to receive DOT daily. Where the patient uses her/his own transportation, for example in the absence of adequate public transport, and would like to receive transport reimbursement, an individual solution should be found with the assistance of the integrated care coordinator, and recorded in the individual plan.

Currently, all patients are eligible for the vouchers, and patients only receive those if they are fully adherent, meaning missing a maximum of 1 dose in a week. In Vilnius, the approach is to allow a maximum of 2 doses missed per week, which seems to have a motivating effect and this approach should be considered for the whole country. It is recommended to provide material support to patients only if the intake interview identified financial and nutritional needs, and mobility and transportation needs. Both nutrition and transportation vouchers also serve as enablers, they help patients take their medication.

Psychological support

Psychological support in the form of psychological counselling, peer support from a (former) TB patient, or self-help groups improve treatment outcomes.

Tracer & Digital medication monitor

Tracer in the form of Short Message Service (SMS) or text messages, telephone calls or automated telephone reminders, and digital medication monitors (pill boxes) have shown to improve patient outcomes. These forms of patient support are currently not used in the country and therefore not further discussed.

3.6 Non-adherence and loss to follow up

For the purpose of this guideline, the definition of non-adherence is the following: a patient who in a period of 2 weeks during the intensive phase missed more than 10% of the prescribed medication, and a patient that in a period of 4 weeks during the continuation phase missed more than 10% of the prescribed medication.

The definition for lost to follow-up is ‘a TB patient who did not start treatment or whose treatment was interrupted for 2 consecutive months or more.’21 Lost to follow-up results from poor management of non-adherence. If adequate mechanisms exist to trace patients that are non-adherent and still alive and in the country and bring them back to treatment, then there will not be any lost to follow-up.

The individual care and support plan describes the risks for the individual patient to face challenges with treatment adherence and includes the specific interventions offered to reduce the risk of poor treatment outcome. These actions do not guarantee that the patient remains adherent. When a patient is non-adherent, the DOT provider needs to alert the integrated care coordinator. The integrated care coordinator’s first step is to reach out to the patient by telephone. The integrated care coordinator should visit the patient or urge the patient to come to the usual DOT place, if the clinical condition of the patient allows such a visit. Figure 1 shows the path to follow in case a patient does not show up for DOT, or if a patient, who attends regularly at a certain time, doesn’t show up at the usual time. The integrated care coordinator should explore reasons why the patient is non-adherent and discuss solutions to overcome the situation. The care coordinator should remain respectful towards the patient because a supportive and understanding attitude is more beneficial than a punitive attitude. If non-adherence persists, the


integrated care coordinator calls for a meeting of the multidisciplinary team, if available for this patient, to decide the course of action.

Figure 1 Flow diagram for action if patient does not attend DOT

After a period of non-adherence, a patient who receives standard case management would probably move to enhanced case management. The patient and the integrated care coordinator should agree on what support is needed to ensure that the patient can adhere to treatment. There is some evidence that the following interventions result in improved treatment outcomes:4

- Outreach work and involvement of community workers

o Involvement of community worker in case management of the homeless population

o Engaging nonclinical professionals in outreach work

o Treatment provided using an outreach team

o Enhanced case management of people who use drugs

- Communication and collaboration between services and patient

o Communication and intensive contacts between TB health providers and the patient

o Facilitating contact between migrants and healthcare services

o Facilitating cooperation between healthcare services

(It is possible that cooperation between healthcare and social care services also improves treatment outcomes).

- Incentives and enablers

o Adding incentives or enablers to DOT for people who use drugs

The next chapter includes more information on how to deliver such interventions in the Lithuanian context.

As a last resort, when the patient remains non-adherent and poses a risk to public health, the integrated care coordinator alerts the municipality, which should initiate the process for mandatory isolation.


3.7 Contact investigation

The NPHC is responsible for contact investigation. Contact investigation should be performed for all bacteriologically confirmed pulmonary TB patients. Once the pulmonologist diagnoses TB, the pulmonologist submits form 058-089-151/a to the NPHC, who will initiate contact investigation. Both pulmonologist and NPHC create a list of close contacts, which the pulmonologist provides on form No 058-089-151/a and submits to NPHC.

After receiving the form the NPHC:

- makes a list of contacts who need to be tested for TB. The NPHC includes the information about the contacts in a special form called “Registration sheet for people who had contact with patient with communicable disease” (form approved by order of the Minister of Health 2016-10-07 No V-1159).

- informs the people on the list about the potential risk to their health, the need to undergo a medical examination and the need for an immediate (not later than within 1 month) visit to the family doctor to check for TB. The NPHC submits a special prescription called “Prescription for a family doctor for a person who had contact with patient with a communicable disease” (form approved by order of the Minister of Health 2016-10-07 No V-1159) to a patient. The family doctor can request a CXR for adults and a tuberculin skin test for children.

- after receipt of information from healthcare institutions about individuals who did not present for contact investigation, the NPHC contacts them by phone, goes to the place of residence, place of employment, or another location where they may find the person to convince the person to present for contact investigation to the family doctor.

Sometimes the NPHC specialist conducting the contact investigation, visits the home of the index patient to conduct interviews and ensure referral of all household contacts for evaluation.

For non-bacteriologically confirmed pulmonary TB or for extrapulmonary TB, NPHC conducts contact investigation only if the TB patients works at a children education institution, in food production, in healthcare, in production and sale of toys, or at resident and community services providing institutions.

If the findings of the examination are compatible with TB, the family doctor will refer the person to the pulmonologist for further diagnosis. Children below 18 years old are offered treatment of latent TB infection if reactive on the skin test and active disease is excluded. The usual right to confidentiality should be respected as much as possible. Confidentiality is laid down in the General Data Protection Regulation and other national health-related laws.

3.8 Related guidelines

The medical treatment of TB patients is an important part of the integrated care. For the medical treatment of TB and HIV, the existing guidelines and ministerial orders should be followed. The most important guidelines in this context are:

- Law on Human Communicable Disease Prevention and Control

- Action plan for reducing health inequalities in Lithuania 2014-2023 and amendment

- Procedure of TB case detection and management (Order of the Minister of Health 23-06-2016 No V-837)

- Procedure of Directly Observed Treatment Short-course Services (Order of the Minister of Health 12-02-2016 No V-237, last revision 2018)

- Procedure on HIV testing among TB patients (Order of the Minister of Health 30-04-2008 No V-374, last revision)


- Organization of the Mandatory Hospitalization and / or Mandatory Isolation of the Patients and Persons Suspected of Contracting Communicable Diseases also after Being in Contact with a Sick Person (Order of the Minister of Health 06-06-2002 No 258, last revision)

- Procedure of HIV infection diagnostic and treatment (Order of the Minister of Health 03-05-2010 No V-384, last revision 2018)

- HIV/AIDS and STI action plan 2018-2020 (Order of the Minister of Health 23-04-2018 No V-503)

- TB prevention and control strategy for prisons (Order of the Director of Prison Department 22-08-2016 No V-289)

- Prophylactic examination of prisoners regarding communicable diseases (Order of the Minister of Health and Minister of Justice 02-07-2002 No. 343/191)

- Procedure on the epidemiological diagnostics of communicable disease case and outbreak (Order of the Minister of Health 2016-10-07 No V-1159)

- Regulation of the functions of social care workers at the health care institutions (Order of the Minister of Health and Minister of Social affairs and Labour 06-10-199 No 432/77, last revision in 2002)

The above list of guidelines and Ministerial orders may change over time, and this guideline may not reflect the most up to date situation. The latest version of guidelines and Ministerial Order should be applied.


4 GROUPS AT RISK OF POOR TB TREATMENT OUTCOME

This chapter outlines some of the characteristics of groups at risk of poor TB treatment outcome. These are TB patients “whose socioeconomic conditions or lifestyle makes it difficult to recognise TB symptoms, access health services, self-administer treatment and attend regular healthcare appointments”.4 The challenges and needs of these groups and the recommended integrated care and support interventions are presented below.

It is not possible to accurately predict who will adhere to tuberculosis treatment, but a number of vulnerabilities due to social (e.g. poverty) or behavioural (e.g. drug use, delayed health seeking) factors, may lead to non-adherence. Persons vulnerable to TB may not recognise the symptoms of the disease, have poor access to healthcare services or face difficulties when following treatment.22 As TB incidence in the general population decreases, TB among the most vulnerable and socio-economically disadvantaged groups becomes an increasing proportion of the total burden. 4 Particularly in Lithuania, based on the epidemiological data and expert opinion, the following groups have been identified as at risk of poor TB treatment outcome:

1. Drug-resistant TB patients

2. People living with HIV

3. People with problematic alcohol use

4. People who use drugs

5. Homeless persons

6. Prisoners / persons with a history of incarceration

7. People without health insurance

8. Children

9. Labour migrants

Persons belonging to one or more of these groups may need enhanced case management, to help them adhere to TB treatment as well as link them with other services for vulnerable groups.

4.1 Patients with drug resistant TB

People with DR-TB may have resistance to only one of the TB medications, but could also have MDR or XDR-TB. The fact that someone has DR-TB does not mean they should automatically receive enhanced case management, however, because of the more challenging management, potentially many DR-TB patients do qualify for enhanced case management. In addition, treatment outcomes for DR-TB in Lithuania are very poor (only 36% successful treatment in the period 2012-2014), and thus patients with DR-TB need very careful assessment of their risks for poor treatment outcome and close follow-up to improve the outcomes.

4.1.1 Challenges and needs

The duration of treatment for DR-TB is more challenging compared to DS-TB because of the pill burden, length of treatment and its side effects. Co-morbidities such as HIV or psychosocial problems such as problematic alcohol use, influence diagnosis and treatment. Patients are usually physically more ill, and may therefore experience anxiety. Furthermore, the disease may lead to unemployment and loss of income.


4.1.2 Integrated care and support

The individual care and support plan, including adherence support interventions, forms the basis for the integrated care. Treatment should follow current guidelines and should include an HIV-test. The treating pulmonologist should arrange consultation with an infectious disease specialist in case the HIV-test is positive.

Patients with DR-TB may need more frequent patient education and counselling to support adherence. The integrated care coordinator and/or the DOT provider, whether in hospital or in the community, has to verify frequently with the patient whether s/he understands the situation and has questions. In the first phase of the treatment, the patient may need more intensive education and counselling, however, as the patient approaches the end of treatment, questions on the post-treatment period may arise, for example on returning to work if that had not yet occurred or long term consequences of the illness.

A home visit early in the treatment, if the patient agrees, may help to support the patient adequately and facilitates identification of contacts, education of the family about TB and infection control. A home visit may provide additional information about the patient’s situation and can help in identifying barriers to adherence that may require interventions in the individual care and support plan.

A home visit should be discreet, in order not to stigmatize the patient, i.e. the integrated care coordinator does not need to use the medical uniform, and should keep to the rules of preserving the patient’s confidentiality. Certain steps need to be taken before, during and after the home visit. Review the information about the patient from the record of the intake interview before the visit in order to determine if there is need for any special precautions. It is recommended to have a visit jointly with a colleague or another member of the multidisciplinary team if the patient has a history of drug use, problematic use of alcohol or any extreme or violent behaviour. If the person conducting the home visit, for any reason, does not feel comfortable entering the home, an option is to speak with the patient outside the home. After the visit the person who conducted it should check in with a colleague or someone else at the work place, to inform that the visit is over.17

It is important that the patient feels at ease to express any problems with the treatment, and that diagnosis of side effects of treatment occurs as soon as possible followed by their treatment.

Where the disease has led to loss of income, a social worker should assist to access disability benefits.

4.2 People living with HIV

In 2017, UNAIDS estimated there were 2,800 people living with HIV (PLHIV) in Lithuania, of whom 29% received ART. PLHIV are much more likely to develop TB disease compared to people without HIV and living in the same country. 23 The fact that someone has HIV-infection in addition to TB, does not mean they should automatically receive enhanced case management, however, because of the more challenging management, potentially many TB patients with HIV do qualify for enhanced case management. In addition, the very poor treatment outcomes for co-infected TB patients in Lithuania (only 43% successful treatment for HIV-infected DS-TB patients in the period 2012-2014) demands a very careful risk assessment with appropriate interventions to support adherence.


Clinical management of patients with both HIV and TB may be complex, especially if the patient has a resistant form of TB. At the time of writing of this guideline PLHIV who have TB receive a prescription and collect ART from a pharmacy. Depending on the type of medication, either it is given at no cost i.e. the cost is covered by the NHIF, or the patient may have to pay a small contribution.

Challenges that PLHIV with TB encounter include pill burden, less tolerance of the medication, drug-interactions, poor nutrition, stigma and discrimination. PLHIV with TB may also experience fears about their diseases and the medication they have to take. Furthermore, TB may lead to unemployment and loss of income.


PLHIV are often injecting drug users or have a history of injecting drugs. Where this is the case, they may experience all the challenges and needs related to drug use. Challenges related to drug use are discussed in section 4.4 of this chapter.


The individual care and support plan, including adherence support interventions, forms the basis for the integrated care. Treatment should follow current guidelines, which includes treating all HIV-infected persons with ART, including TB patients, irrespective of their CD4 cell count. This applies to patients with DR-TB as well.

Co-infected patients need close monitoring to assess the occurrence of side-effects related to co-treatment and TB-associated immune reconstitution inflammatory syndrome.24 Early treatment of side effects will improve adherence.

The integrated service manager for PLHIV can be someone, who is already known to the PLHIV through visits to the ART clinic. The preferred treatment administration option is DOT; not only because of drug-drug interactions and more severe disease, but also because of the risk for poor treatment outcome. The location for DOT is one convenient and acceptable to the patient, and ideally follow-up follows the one-stop model, where TB and HIV services are integrated. For PLHIV already on ART at the time of TB diagnosis, the integrated HIV service manager should follow the patient closely so that s/he does not abandon ART.

Co-infected patients whose situation is further complicated by problematic alcohol use, drug use and/or homelessness, should receive enhanced case management by a multi-disciplinary team, involving the appropriate specialists. DOT locations for them include: ART clinic, homeless shelter, low threshold centre, a day-care centre (such as the one run currently by Caritas), or the patient home (treatment is then brought to the patient home by a member of an outreach team).

4.3 People with problematic alcohol use

The term problematic alcohol use sets the focus on the problematic consequences for the person drinking alcohol, irrespective of whether the person is alcohol dependent or uses alcohol in an abusive manner. 4 The Alcohol Use Disorders Identification Test (AUDIT) explores consumption, dependence and alcohol related problems,25 and is a tool the TB programme should use to assess reliably the patients’ drinking behaviour, which can influence the course of TB treatment and adherence. The clinician can use the tool when diagnosing TB; or, alternatively, the tool could be part of the initial assessment.


Alcohol use may become a determinant of increased TB vulnerability either through increased risk of exposure and/or immune suppression, or other morbidities that increase risk of progression to active TB disease.4

Problematic use of alcohol typically predicts non-adherence.17 People with problematic alcohol use have a much higher risk of liver problems due to the TB medications. This also applies to people with a history of problematic alcohol use who have existing liver damage at the time of TB diagnosis.

People with problematic alcohol use may have limited access to health care because they lack health insurance, do not have a family doctor, or are homeless. A combination of these factors occurs also.

Adding TB disease to problematic alcohol use may lead to unemployment and loss of income, if the person was still in employment at the time of TB diagnosis.



The individual care and support plan, including adherence support interventions, forms the basis for the integrated care. Treatment should follow current guidelines and should include more frequent monitoring of liver functions to detect early damage to the liver.

Patients with a positive AUDIT test may need a referral to a psychiatrist to diagnose alcohol disorder and discuss treatment options.

A multidisciplinary approach seems best suited for this group of patients, where TB services link closely with services for problematic alcohol users. The multidisciplinary team should include a social care worker with relevant knowledge and skills on problematic alcohol use, who can assist in addressing social problems, even when the patient is not motivated. Continued involvement of a social care worker may help motivate the patient to address her/his social problems, fully or in part. This applies irrespective of whether the TB patient decides to undertake actions to address the problematic use of alcohol.

People with problematic alcohol use should receive advice to avoid or cut down on their use of alcohol during the treatment. If this is not possible, it is important to include actions in the individual care and support plan to ensure taking TB (and possibly other) treatments daily. An outreach worker may be the best approach for this group of patients, though the basic principle of discussing with the patient what is best for her/him applies. The morning, when patients are probably sober, is the best moment for DOT. For the weekend, the care plan needs to include alternatives, for example a relative or friend, to assist with DOT.

4.4 People who use drugs

People who use drugs include people who use psychotropic substances through any route of administration. 26 In 2016 the estimated number of people who inject drugs in Lithuania was 8,868, of which between 6,462 and 7,503 were high risk opioid users and between 4,742- 7,000 high risk amphetamines users. 27 The Lithuanian Centre for Communicable Diseases and AIDS estimated the HIV prevalence among injecting drug users at 2.2%.2 The coverage of opioid substitution therapy was 34% in 2016.


People who use drugs, irrespective of their HIV status, tend to have higher rates of TB.28 People who use drugs who also have a history of TB treatment interruption or of incarceration have a higher risk of MDR-TB. 26 Latent TB infection and TB disease may result directly from the risky drug use such as inhaling substances or exhaling directly into another person’s mouth, or indirectly from the unventilated environments where people who use drugs may congregate, which may also contribute to outbreaks of TB among people who use drugs.29

Delays in health seeking, because of for example lack of health insurance, not having a family doctor and thus having to pay for consultations, or fear of withdrawal, could result in more advanced stages of TB in people who use drugs. Homelessness is a common problem among people who use drugs in Lithuania. Currently access to opioid substitution therapy is limited and TB, unlike HIV, is not a basis to prioritise provision of opioid substitution therapy, should people who use drugs be on the waiting list for opioid substitution therapy. People who use drugs are often unemployed, increasing the risk of late diagnosis or poor treatment outcome.

Treatment of TB in people who use drugs is more complicated because illicit drug use typically predicts non-adherence.17 People who use drugs have a much higher risk for liver problems due to the TB medications.26


The individual care and support plan, including adherence support interventions, forms the basis for the integrated care. Treatment should follow current guidelines. This should include more frequent monitoring of liver functions to detect early damage to the liver.


Enhanced case management, including the use of peers and improved service models has shown to improve treatment outcome of people who use drugs.4 All people who use drugs should have universal access to a comprehensive package of harm reduction, including opioid substitution therapy for opioid-dependent people who inject drugs. As much as possible harm reduction and TB care should be provided within one setting, in order to maximise access and adherence.26

Ambulatory DOT is the preferred TB treatment delivery option through integrated outreach services, unless there are clinical indications for hospitalisation. If the patient stays in hospital, it is important to continue all other health-care such as opioid substitution therapy and ART in hospital. Providing HIV, TB and hepatitis treatment isolated from harm reduction services may exacerbate the situation foregoing the opportunities to efficiently monitor drug-drug interactions, provide relevant patient education, and use harm reduction as a motivator for adherence to e.g. TB treatment.26 Not addressing one disease might undermine the treatment outcome of another.

The multidisciplinary team, potentially including NGO outreach workers, should help address drug dependence, TB, and as much as possible other medical and psychosocial problems that affect the person. Preferably the team provides the integrated services in one location, which is agreed upon, included in the care plan and convenient for the patient. Possible locations include DOT clinic, low threshold centre, community setting, primary health care facility, mental health centre, psychiatric clinic, private centre or state inpatient facility, mobile DOT or the patient’s home.

Further adherence interventions, alone or in combination, possibly include adherence reminders, peer counselling, monetary incentives and attending to people who use drugs’ psychosocial and health-care needs. 26 If the patient does not have a family doctor, the social worker in the team should assist the patient with registering with a family doctor. Where homelessness is one of the problems, the multidisciplinary team needs to collaborate with shelters for homeless for temporary housing and a safe environment.

People who use drugs should receive advice to avoid or cut down on their use of illicit drugs during the treatment. If this is not possible, it is important to include actions in the individual care and support plan to ensure taking TB (and possibly other) treatments daily. An outreach worker may be the best approach for this group of patients, though the basic principle of discussing with the patient what is best for her/him applies. The morning, when patients are probably not yet heavily under the influence of drugs, is the best moment for DOT. For the weekend, the care plan needs to include alternatives, for example a relative or friend, to assist with DOT.

4.5 Homeless people

For the purpose of this guideline, the definition of homeless people includes roofless people, i.e. without a shelter of any kind, houseless people, i.e. with a temporary place to sleep such as a shelter, and people living in insecure housing, for example insecure tenancies, illegal or inadequate housing.30


People that want to stay long term in a shelter, need to have a ‘TB-free’ declaration, and have to provide this declaration each year when in long stay. This may pose a challenge if uninsured for healthcare. However, the declaration is covered by the municipality if the person stays at the municipal homeless shelters. Non-infectious persons with TB who adhere to their treatment can (continue to) stay at the shelter, however the shelter is not involved in the tenant’s TB treatment at all.

Houseless people, who stay at shelters, often have a social security number and health insurance, though not always. The shelter’s social worker or health care staff can facilitate their visits to a family doctor, or accompany them to a primary health care centre. However, shelter’s health care personnel do not provide treatment or medical services, beyond e.g. advice on personal hygiene.


Roofless people who do not make use of shelters may face various social problems, which may include drug use, problematic use of alcohol, mental illnesses, history of imprisonment. Other problems of homeless people are lack of identification documents, lack of knowledge where to go for health or other services, and lack of skills to keep appointments. Homelessness typically predicts non-adherence to TB treatment. Homeless people are often unemployed, increasing the risk of late diagnosis or poor treatment outcome.

Homeless people may lack health insurance, have no family doctor, share an enclosed air space with other individuals with undetected active pulmonary TB, have no means to securely store prescribed medication and no space in which to self-administer TB treatment, rest and recuperate.17


The individual care and support plan, including adherence support interventions, forms the basis for the integrated care. Treatment should follow current guidelines.

The preferred treatment delivery option is DOT in the community, unless there are clinical indications for hospitalisation. Referral to a homeless shelter would provide them with a place to securely store their medication and to rest and recuperate. Preferably, the shelter staff will take the role of the DOT provider and alternatively, an outreach provider or team could come to the shelter to administer DOT.

Involvement of a medical or non-medical community worker to provide education, to facilitate the communication between the homeless person and the health care provider and to monitor the treatment, will improve TB treatment completion.4

For roofless people, mobile outreach TB services can support them to adhere to treatment and provide the material support in the form of food vouchers.

4.6 Prisoners / persons with a history of imprisonment

Prisoners and persons with a history of incarceration are those currently in detention or those who have been in detention, including people in centres for pre-trial, in prison for convicted crimes, in centres for juvenile offenders and in other correctional facilities.4 When in prison, a person with TB is admitted in the prison hospital for the duration of his/her treatment or until release.


People with a history of incarceration may face various social problems among which, not having a family doctor or a health insurance, and homelessness. People with a history of incarceration usually show limited health seeking behaviour.2

Upon release from prison, the patient receives medical documentation and if still on TB treatment, the patient is insured by the State and able to continue treatment in the community. However, former prisoners may not be aware of their healthcare insurance status, i.e. they may not know that their treatment is for free. They are also likely to sustain long periods of unemployment. Currently in Lithuania, upon release, there is no clear link between the prison TB services and the community services. This is reflected in the high proportion of prisoners that do not complete treatment upon release. The prison cannot provide information regarding the health status on released prisoners to the probation services or other civilian services because of confidentiality. The receiving pulmonologist receives medical documentation, but the likelihood of tracing released prisoner still on TB treatment is low, unless the released prisoners present to the health services. These situations may exacerbate the risks of treatment interruption, development of MDR-TB and transmission to the community.



The individual care and support plan, including adherence support interventions, forms the basis for the integrated care. Treatment should follow current guidelines. This includes, for PLHIV, screening for TB at the time of HIV diagnosis or before starting ART. If a prisoner received opioid substitution therapy before incarceration, its provision should continue in prison. Likewise, opioid substitution therapy initiated in prison, should continue in the community upon release.

Continuation of treatment upon release is important and the prison-community collaboration should be pro-active. In addition to the medical documentation, the sending pulmonologist should inform, preferable by telephone, the municipality doctor and the receiving pulmonologist. If the released prisoner does not present within a week, the receiving pulmonologist should inform an outreach worker, e.g. the municipality social worker to try to find the patient in the community.

To improve the likelihood of prisoners presenting themselves for continuation of care upon release, the prison hospital nurses can improve the patient education on TB, emphasising the importance of treatment continuation. The TB education should include information on the existence of enablers in the form of food and transportation vouchers for attending DOT.

The prison hospital nurses should discuss the possibility of the integrated care approach with the patient, explaining how an integrated care coordinator can help them with several other challenges they may face. With written consent from the patient in prison, the prison hospital nurses can contact social workers, whether from the municipality or from an NGO, to facilitate an easier transition and act as integrated care coordinator. As soon as possible after release, the integrated care coordinator should develop an individual care and support plan, which should be explicit on including transition from prison, registration documents, registration at the Employment Office, and registration for social benefits and housing.

It is likely that prisoners with TB upon release or people with a history of incarceration, encounter social problems. The support of a multidisciplinary team to help them cope with the many issues they may encounter is important for TB treatment outcome. The preferred treatment option is through outreach services. As a minimum, a social worker (from the prison, municipality or a NGO) should accompany persons with a history of incarceration on their first visit to TB treatment provider.

4.7 People without health insurance

Lithuania has a system of compulsory health insurance. Lithuanian citizens, foreign nationals permanently residing in the country, and foreign nationals temporarily residing and legally employed in the country are obliged to pay compulsory health insurance contributions to the NHIF, and consequently have health insurance. The State provides health insurance to special categories of people, such as pensioners, disabled and others per Article 6(4) of the law on Health Insurance of the Republic of Lithuania. This includes unemployed persons, registered as job seekers at the Employment Office. Regular visits to the Employment Office are mandatory to retain the State-provided health insurance, failure to comply may lead to being unregistered for a period of six months, and a loss of all related benefits, including the health insurance.


People described in the groups earlier in this chapter often have no health insurance because they fail to pay their regular visits to the Employment Office, subsequently they lose their insurance and other benefits. For them it becomes a problem to present to a family doctor when seeking care, also because they probably have no registration with a family doctor. If they do present, they need to pay for the tests, which poses a problem for these groups.


Some municipalities have a primary healthcare facility where uninsured people can go in case of ill health, but this is not systematic across the country. Payment for diagnostic tests could also occur through social care centres with funding from the municipalities, however, this does not seem to function well or uninsured people are not aware.

In absence of a registration at the Employment Office, an unemployed person has to purchase an insurance, or pay for medical services, including TB testing by themselves. The ideal solution to increase access to TB diagnosis is to provide it free of charge to uninsured persons. Once TB is diagnosed, the State covers medical expenses for the diagnosed individual.



It is possible to apply for an allowance at the Ministry of Social Affairs and Labour that can cover such expenses as diagnostics, medications, and travel. The procedure starts with a written application and may take around three weeks. The amount of time varies per municipality. An individual can receive the allowance up to two times a year. Family doctors should therefore refer a person with TB symptoms and without a health insurance to receive assistance of a social worker to navigate through the process of receiving this allowance, and facilitate obtaining a health insurance. The social worker can also facilitate registration of the patient with a family doctor, if the patient does not have one.

4.8 Children

Children are those aged 0 to 18 years old. Young children, up to 5 years of age, have a high risk to progress to TB disease once infected, and for older children the risk is relatively small.


The country does not have child friendly TB medication formulations, and children cannot be prescribed new and repurposed TB medicines. Staff providing the medication do not always crush pills, which means parents or caretakers of children with TB have to have the pills crushed at a pharmacy and costs are incurred.

Other challenges include stigma or self-stigma related to TB, especially in adolescents, and remoteness of DOT rooms in rural areas. Adolescents form a particularly vulnerable group because there are often important psychosocial challenges, unique challenges for autonomy and adherence.31



The country should acquire child-friendly formulations in the form of liquids, dissolvable tablets or chewable tablets. These formulations are easier for the children to swallow and for adult caregivers to administer, allowing the correct dosage compared to crushing tablets.

The integrated care coordinator should discuss different options as DOT location, which may include kindergarten or school. Computer-savvy adolescents may like VOT.

In case a family with a child with TB already receives assistance from a social worker, the social worker’s role could include adherence support as well.


Parents, caregivers and children with TB, except for those too young to understand their disease, should receive information and education about TB. A recent study showed that a baseline education session followed with a follow-up call 7-10 days after the baseline visit, in combination with urine tests to monitor treatment adherence, improved treatment in children and young people (< 18 years).32

4.9 Labour migrants

According to the available data, TB among foreign born individual hardly occurs in Lithuania. However, Lithuanians often seek work in other (European) countries and may return to their country when they fall ill. This does also apply for those with TB, and it might be difficult to ensure their continuation and completion of treatment when they return to Lithuania. The Early Warning and Response System in the European Union for information exchange on communicable diseases threats is used by Lithuania. Using this system does not ensure that treatment or contact investigation take place. Through the Early Warning and Response System confidential information is provided to the relevant public health authority. This may include personal information such as name and address, other contact details, age, dates of travel, etc. However, TB patients with a history of labour migration are frequently reluctant to provide information about living conditions, contacts or their work place abroad, which makes difficult to perform proper contact investigation.

Returning labour migrants may have a low level of health literacy, including information about the importance of TB treatment and adherence. These patients may not have received sufficient information in a language they could understand very well, while being diagnosed and treated abroad. These patients could benefit from information sessions to provide information about TB and adherence, the importance of contact investigation and other relevant information. Returning labour migrants may need counselling, and assistance with registration for social benefits, to address loss of income. An intake interview will evaluate these and other needs, for instance for a food voucher, and the individual care and support plan needs to include adequate interventions. There are few options for the TB services to take action in case the returning migrant does not present for treatment continuation. However, providing information at relevant places, such as the Employment Office, the airport or the train/international bus stations, and raising awareness may help to draw attention to the importance of treatment completion.


REFERENCES

1. European Centre for Disease Prevention and Control, World Health Organization Regional office for Europe. Tuberculosis surveillance and monitoring in Europe. 2018.

2. Data obtained from Lithuania during guideline development period (May-October 2018). Sources: Lithuanian Department of Statistics, Centre for Communicable Diseases and AIDS, National Health Insurance Fund, Prison Department, TB registry. Interviews with stakeholders. 2018.

3. European Centre for Disease Prevention and Control, World Health Organization Regional office for Europe. HIV/AIDS surveillance in Europe 2015. 2016.

4. ECDC. Guidance on tuberculosis control in vulnerable and hard-to-reach populations. European Centre for Disease Prevention and Control; 2016.

5. World Health Organization. WHO End TB Strategy. [Internet]. 2015. Available from: http://www.who.int/tb/post2015_strategy/en/

6. Stop TB Partnership. The paradigm shift 2016-2020. Global Plan to End TB. 2016.

7. World Health Organization, Regional office for Europe. Tuberculosis action plan for the WHO European Region 2016–2020 [Internet]. 2015 [cited 2018 Sep 13]. Available from: http://www.euro.who.int/en/about-us/governance/regional-committee-for-europe/past-sessions/65th-session/documentation/working-documents/eurrc6517-rev.1-tuberculosis-action-plan-for-the-who-european-region-20162020

8. World Health Organization Regional office for Europe. Roadmap to implement the tuberculosis action plan for the WHO European Region 2016–2020. Towards ending tuberculosis and multidrug-resistant tuberculosis. 2016.

9. MINISTER FOR HEALTH OF THE REPUBLIC OF LITHUANIA. ORDER On the approval of the Action Plan for reducing health inequalities in Lithuania, 2014-2023. No V-815. 2014.

10. Guidelines for treatment of drug-susceptible tuberculosis and patient care, 2017 update. WHO; 2017.

11. United to End TB. Every word counts. Suggested language and usage for tuberculosis communications. First edition [Internet]. Stop TB Partnership; 2013. Available from: http://www.stoptb.org/assets/documents/resources/publications/acsm/LanguageGuide_ForWeb20131110.pdf

12. O’Donnell MR, Daftary A, Frick M, Hirsch-Moverman Y, Amico KR, Senthilingam M, et al. Re-inventing adherence: toward a patient-centered model of care for drug-resistant tuberculosis and HIV. Int J Tuberc Lung Dis Off J Int Union Tuberc Lung Dis. 2016 Apr;20(4):430–4.

13. Voitzwinkler F, Sommerfeld P, Stillo J, Turusbekova N, Naimov S, Schchenina K, et al. Moving to people-centered care: Achieving better TB outcomes. TB Europe Coalition, Alliance for Public Health; 2017.

14. TB CARE I. International standards for tuberculosis care. Edition 3. 2014.

15. European Respiratory Society, European Centre for Disease Prevention and Control. European Union Standards for Tuberculosis Care, 2017 update [Internet]. 2017. Available from: https://ecdc.europa.eu/sites/portal/files/documents/ESTC-leaflet-September-2018.pdf


16. Jansen-Aaldring N, Van De Berg S, Van Den Hof S. Patient support during treatment for active tuberculosis and for latent tuberculosis infection: policies and practices in European low-incidence countries. J Adv Nurs. 2018 Jul 2;

17. Story A, Cocksedge, Malcolm. Tuberculosis case management and cohort review: guidance for health professionals. Royal College of Nursing; 2012.

18. WHO. Adherence to long-term therapies: evidence for action. 2003.

19. World Care Council. Patients’ Charter for Tuberculosis Care. 2006.

20. Checklists for Patient education/counselling sessions for those with active TB disease, Including drug-resistant TB. MSF OCB; 2013.

21. World Health Organization. Definitions and reporting framework for tuberculosis – 2013 revision. 2013.

22. Interventions in vulnerable groups are the key to eliminating tuberculosis in Europe. ECDC; 2016.

23. World Health Organization. A guide to monitoring and evaluation for collaborative TB/HIV activities. WHO/HTM/TB/2015.02. 2015.

24. WHO policy on collaborative TB/HIV activities: guidelines for national programmes and other stakeholders [Internet]. WHO; 2012. Available from: http://apps.who.int/iris/bitstream/handle/10665/44789/9789241503006_eng.pdf?sequence=1

25. Babor T, de la Fuente J, Saunders J, Grant M. AUDIT: The Alcohol Use Disorders Identification Test. Guidelines for use in primary health care. WHO; 1992.

26. Integrating collaborative TB and HIV services within a comprehensive package of care for people who inject drugs. Consolidated guidelines [Internet]. WHO; 2016. Available from: http://apps.who.int/iris/bitstream/handle/10665/204484/9789241510226_eng.pdf;jsessionid=7CB6CF8A1BF119391C7BA95EABD775DE?sequence=1

27. Thanki D. Epidemiological research to estimate the number of high risk drug users in Lithuania [Internet]. Republican Center for Addictive Disorders; 2018. Available from: http://rplc.lt/images/files/Estimates%20for%20RCAD%20Lithuania_Research%20Report_Main_FINAL.pdf

28. Deiss RG, Rodwell TC, Garfein RS. Tuberculosis and illicit drug use: review and update. Clin Infect Dis Off Publ Infect Dis Soc Am. 2009 Jan 1;48(1):72–82.

29. Stop TB Partnership. People who use drugs. Key populations brief. 2016.

30. ETHOS. European typology of homelessness and housing exclusion [Internet]. [cited 2018 Aug 13]. Available from: https://www.feantsa.org/download/ethos2484215748748239888.pdf

31. World Health Organization. Guidance for national tuberculosis programmes on the management of tuberculosis in children – 2nd ed. 2014.

32. Guix-Comellas EM, Rozas-Quesada L, Velasco-Arnaiz E, Ferrés-Canals A, Estrada-Masllorens JM, Force-Sanmartín E, et al. Impact of nursing interventions on adherence to treatment with antituberculosis drugs in children and young people: A nonrandomized controlled trial. J Adv Nurs. 2018 May 3;


National Guideline on Integrated Care for Tuberculosis ... file · Web view6. Integrated care...

Documents

Transcript of National Guideline on Integrated Care for Tuberculosis ... file · Web view6. Integrated care...