Retour5.1 Models of care for all TB patients
Although traditionally patients with DR-TB were hospitalized for portions of, and sometimes all of, their treatment, recommendations on this have changed. With the increasing use of all-oral DR-TB treatment, patients with DR-TB should be treated whenever possible in an outpatient-based treatment programme similar to patients with DS-TB (60–62). Additionally, for both patients with DR-TB and those with DS-TB, treatment should move towards a decentralized, ambulatory care setting in order to make it easier for all patients to access medications and treatment support and for TB treatment to be less disruptive to their lives.
The following recommendations from WHO’s guidelines (15) apply to patients with DR-TB.
However, sometimes patients do require treatment in the hospital (inpatient). These may be patients with DR-TB, but they may also be patients with DS-TB with severe disease or treatment complications. The following discussion addresses some of the concerns regarding strategies for decentralized (outpatient/ambulatory) care models – which apply to majority of TB patients – and inpatient or hospital-based treatment for patients who need special treatment and care.
5.1.1 Outpatient model of TB treatment: decentralized care
Decentralized care means care that is provided in smaller, ambulatory, non-specialized health care centres closer to where a patient lives, often by community health workers or nurses, non-specialized doctors, community volunteers or TB treatment supporters. Care could occur at local centres (e.g. community centres), or at the patient’s home or workplace. Having treatment and care provided in decentralized health care centres is a good way to improve access to treatment and increase the number of patients who receive regular, community-based treatment and support. Decentralized care is often less disruptive to patients’ lives, allowing them to access treatment, care and counselling more easily and with less cost. It may also allow them to continue to work (therefore lessening the financial burden of TB disease) and to remain with their families. Decentralized care can be used for patients with either DS-TB or DR-TB. According to the WHO guidelines, all-oral regimens are preferred for TB treatment (61 –63); however, if the patient must receive injectable medication, it should be investigated whether the injectable can be given at a decentralized location (60–62).
Decentralized care may not be best for all patients. Of particular concern would be patients with severe TB disease or severe comorbidities or very infectious forms of TB. However, studies have shown higher rates of treatment success and fewer patients lost to follow-up when patients were treated with decentralized care versus hospital-based care (64). There were no higher risks of death or treatment failure among patients who were treated with decentralized care. Before a patient begins decentralized care, the health care provider needs to make sure that all required safety monitoring (e.g. laboratory tests, ECG) can still be done in the decentralized system or that, when needed, a patient can travel to a clinic or hospital with a higher level of care that can do this monitoring. There should always be a plan to get patients to a hospital if they need inpatient treatment. This may be necessary in certain patient groups at particular risk, such as children with severe forms of TB or people who also have advanced HIV. These patients may need close monitoring in a hospital for a certain period of time.
The backbone of community-based TB care is often a community TB treatment supporter, who may belong to the neighbourhood where the patient lives (53). Community TB treatment supporters, like all health care workers, must respect and preserve patient confidentiality at all times. They can also play an important role in educating the community about TB and can help reduce stigma around the disease. Community-based TB providers need to be properly trained and supervised by qualified health care workers (65). In some settings, and where there are no other alternatives, a community-based TB treatment supporter can even be a family member who has undergone proper training and is supervised by a health care worker or qualified community member. However, family relationships can be complex, and so the nature of family relations should be evaluated beforehand to ensure that the patient receives fully supportive care.
Decentralized care requires staff at the clinics to receive extra training and for the clinics to be able to support TB patients. This is likely to require additional help from the NTP. Clinic staff must be aware of the early detection and management of adverse drug reactions and should be familiar with social support services. When patients are on good medical treatment, the bacterial load rapidly falls and the risk of transmission of TB drops. Nevertheless, infection control measures need to be put in place at the clinic. The patients also need to be educated on infection control measures they can do at home, particularly if they live with someone who is at a particular risk from TB infection, such as a young child or someone living with HIV. These infection control measures will decrease the risk of transmission in households, the community and clinics. In the case of a patient with DR-TB, it may be illegal in some countries to treat DR-TB patients in a decentralized setting, especially when the treatment involves injections. Such legal concerns need to be considered when making plans for decentralized versus hospital-based care (see Box 3).
This decentralized model of care may require the patient to travel from home and receive medicines under person-centred treatment support at the clinic. Long daily travel times or cost of travel could lead to LTFU. Patients may need financial support to help with their travel costs.
5.1.2 Inpatient model of TB treatment and care
Some patients may need to stay in hospital to receive treatment for TB. This is the case, for instance, if a patient has a severe form of DS-TB or DR-TB disease (e.g. meningitis, vertebral bone infection, pericarditis, miliary TB or severe TB lung disease with signs of respiratory distress/failure or sepsis), has serious comorbidities (e.g. severe malnutrition, untreated HIV, uncontrolled diabetes mellitus), is either very young or quite old, or has serious adverse reactions to medication (66). In these cases, the patients may need to be hospitalized until these conditions stabilize. In the past, patients with DR-TB, were routinely kept in hospital until the end of the intensive phase of treatment or until conversion to smear/culture-negative status. Long hospitalization should not be routinely required for patients on DR-TB treatment unless it is absolutely medically necessary. The treatment regimen should rarely require a patient with DR-TB to be hospitalized because every attempt should be made to put the patient on an all-oral regimen that they can receive as an outpatient. Additionally, a patient should be kept in isolation while hospitalized only when no other options remain.
Box 4 lists things to consider when a patient must be hospitalized. Hospitalized patients should have access to all the social support services they need (see Section 3.1). Patients should be hospitalized for the shortest amount of time that is medically safe, and this duration of time should regularly be reassessed by the health care providers. Every effort should be made to transfer the patient’s care to outpatient clinics as soon as it possible.
Good communication and coordination need to be in place between the hospital(s) and outpatient care providers. This should include: 1) notification to appropriate outpatient teams several days ahead of the planned discharge of the patient from the hospital; and 2) supplying all clinical information about the patient, including all prescribed drugs needed for the first 2–4 weeks of treatment as an outpatient.
An assessment of the risks for a patient who is not able to take his/her medicines and a plan to reduce the risks with social support should be discussed with patient and the outpatient care providers well ahead of the patient’s discharge from hospital.
5.1.3 Deciding on the best suited model for a situation
It is important to remember that: 1) decisions on the model of care for a particular situation should not be made in the belief that only one model serves the needs of all patients in a particular setting; and 2) in some settings, allowing community health care workers to do more and different types of jobs to relieve staff shortages and to encourage more meaningful community participation may be important to allow services to be available to all patients. Therefore, in real-life circumstances, multiple models of care may be used depending on the needs of the patient and the resources of the health care system.
Some patients may need hospital-based care (inpatient model) either while receiving complicated treatment or when on end-of-life care. This is because hospitals play a very important role in the clinical management of severe TB disease and DR-TB. This includes: treatment of TB comorbidities (such as HIV or noncommunicable diseases (e.g. diabetes, severe mental health disorders); surgical treatment of selected TB patients; management of severe adverse drug reactions (particularly to second-line anti-TB drugs); treatment of pulmonary complications in patients with severe TB disease; medical support during palliative and end-of-life care; and the initial care of patients who are homeless, have difficult family situations, or who live in remote areas where TB care is difficult or DR-TB care is not yet available.
However, in some settings, depending only on an inpatient model of care may result in problems, namely: it may slow down or even make it impossible to get all patients into treatment due to the high costs of hospital care; create long patient waiting lists due to the lack of hospital beds; cause longer than necessary suffering of patients with TB; and create catastrophic costs for patients. An outpatient system must be in place to support patients upon discharge even in settings that rely mainly on a hospital-based model. Thus, the ability to provide ambulatory TB care has to be built into whatever model is used.
When comparing different treatment models, a number of issues have to be considered (see Box 5) and ethical concerns need to be respected. While outpatient care is often socially more acceptable to patients and reduces health system costs, the creation of outpatient person-centred treatment support is challenging. It requires access to a primary health care network, strong social support and community-based care. However, in some settings, the community-based decentralized model of care is the only way to achieve universal access to treatment.
Whichever model is chosen to provide treatment for TB, a multidisciplinary team of providers – including physicians, nurses, psychologists, social workers and community health workers or volunteers – should be involved in care. The roles and responsibilities of each of these groups of providers will vary depending on the needs and resources available in specific settings.
Adherence to TB treatment – particularly DR-TB treatment – is challenging and therefore social support and social protection measures to improve adherence should be used, whichever model is chosen (see Section 3.1).
The risk of TB (with particular concern for DR-TB) transmission when proper infection control measures are not being used occurs in all models of care whenever the patient remains sputum smear-/culture-positive. However, the risk is particularly serious in the hospital-based model where the adverse effects of transmission could be higher (hospitals are crowded so it is easier to infect more people, and those people are likely to have other serious illnesses as well). This is a critical factor to consider when selecting a model of care for a DR-TB patient.
Person-centred treatment support is the method recommended to deliver treatment and support patients in each of the models of care. New ways to deliver person-centred treatment include VST, which can also be considered in any of the models of care presented above. More specific and detailed WHO guidance on how to implement VST and other digital based technologies to monitor adherence to treatment are presented elsewhere (25).
5.2 Decentralized and integrated family-centred models of TB care for children and adolescents
In high TB burden countries, the capacity to manage TB in children and adolescents is often centralized at the tertiary or secondary level of health care rather than being decentralized at the primary health care level where children and adolescents with TB or TB exposure commonly seek care (67, 68). Care at higher levels in the health system is often managed in a vertical, non-integrated way. Children and adolescents with TB may go undetected because of missed opportunities for contact investigation, TB prevention, detection and care, and as a result of weak integration of child and adolescent TB services with other programmes and services – especially the integrated management of childhood illness (IMCI), malnutrition and HIV services. If not addressed, such access challenges contribute to preventable delays in diagnosis and treatment, which may lead to increased disease severity, suffering and mortality (69).
An important step towards improving access to TB prevention and the management of TB in children and adolescents is the provision of decentralized, family-centred integrated care (67). Integrated, person-centred care and prevention is a key pillar of WHO’s End TB Strategy and aims to ensure that all people with TB have access to affordable high-quality services according to their needs and preferences (5). This is further underpinned in the 2018 WHO roadmap towards ending TB in children and adolescents (67), which calls for the implementation of integrated family- and community-centred strategies.
This section focuses on models of care to increase access to TB services for children and adolescents through family-centred, integrated care. Family-centred models of care refer to interventions selected on the basis of the needs, values and preferences of the child or adolescent and their family or caregiver. This can include health education, communication and material or psychological support. Integrated services refer to approaches to strengthen collaboration, coordination, integration and harmonization of child and adolescent TB services with other child health-related programmes and services. This can include integration of models of care for TB screening, prevention, diagnosis and treatment with other service delivery platforms for maternal and child health (e.g. antenatal care, integrated community case management, IMCI) and other related services (e.g. HIV, nutrition, immunization). Other examples include the evaluation of children and adolescents with common comorbidities (e.g. meningitis, malnutrition, pneumonia, chronic lung disease, diabetes, HIV) for TB and community health strategies that integrate child and adolescent TB awareness, education, screening, prevention and case-finding into training and service delivery activities.
The following are the WHO recommendations on decentralized and integrated family-centred models of care for TB services for children and adolescents (70).
Remarks
- These recommendations relate to TB services along the full range of care with a focus on case detection and provision of TPT.
- The recommendations apply to children and adolescents with signs and symptoms of TB in terms of the impact on case detection. They also concern children and adolescents who are exposed to TB (i.e. TB contacts), and who are eligible for TPT, in terms of the impact on provision of TPT. Children and adolescents with signs and symptoms who need evaluation for TB disease may also have a history of exposure to TB (i.e. TB contacts). Children and adolescents who are TB contacts and who do not have signs and symptoms should be evaluated for TPT eligibility.
- The recommendation on decentralized services refers to enhancing child and adolescent TB services at peripheral levels of the health system where they are closer to the community, and not to replacing specialized paediatric TB services at higher levels of the health system.
- Decentralization should be prioritized for settings and populations with poor access to existing services and/or in high TB-prevalence areas.
- Family-centred, integrated approaches are recommended as an additional option to standard TB services (e.g. alongside specialized services that may have a limited level of integration with other programmes or links to general health services).
- Family-centred care is a cross-cutting principle of child care at all levels of the health system.
These approaches on decentralization and family-centred integrated care aim to bring TB services closer to where children, adolescents and families live. As the recommendations were published in 2022 (70), evidence on the best ways to implement these recommendations is emerging, and national programmes are encouraged to document examples of best practice in this area.
Decentralization includes the provision of access to or capacity for child and adolescent TB services at a lower level of the health system than the lowest level where it is currently routinely provided. In most settings, decentralization applies to the district hospital level (first referral level), the primary health care level or the community level. Interventions to facilitate decentralization include capacity-building of various cadres of health care workers, access to diagnostic services, availability of TB medicines for children and adolescents, and follow-up of children and adolescents with TB or on TPT.
Since children and adolescents who are unwell commonly seek care at the primary health care level, where TB services are not always available, decentralization and integration of such services using a family-centred approach has the potential to improve access to care, especially for children and adolescents who do not need referral to a higher level facility. The objectives of decentralization are closely linked to the aspirations of universal health coverage (all people have access to the health services they need, when and where they need them, without financial hardship), which is a strategic priority for Sustainable Development Goal (SDG) target 3.8 (71).
Decentralization of care at the community level has the following advantages:
- increased equity via improved access to health services;
- provision of TB care at the same time and in the same place for all family members;
- savings in time and money when care is provided closer to home;
- continuity of care between the person’s home, community and local health centre;
- increased community support, which may lead to better adherence to treatment and can be instrumental in overcoming barriers to long-term care, including treatment adherence, transportation costs, missing school and loss of wages during sickness and clinic visits.
Other potential benefits of decentralization in the context of TB include increased treatment coverage in children and adolescents, reduced time to diagnosis and time to treatment, improved treatment success among children and adolescents started on TB treatment and TPT initiation, and reduced transmission (72–75).
Regarding family-centred integrated care, many opportunities exist for the integration of TB services. For instance, opportunities for the integration of TB services at the health facility level exist in outpatient departments; nutrition, HIV, maternal and child health clinics (e.g. prevention of mother-to-child transmission, antenatal care, immunization clinics); general paediatric, adult TB and chest clinics; and inpatient departments. If resources are available, the NTP may consider implementing providerinitiated TB screening in relevant child health entry points, and linkages to diagnosis or treatment. If resources are limited, entry points or services designed to care for sick children could be prioritized.
The WHO policy on collaborative TB/HIV activities recommends the delivery of integrated TB/HIV services, preferably at the same time and location (76). The policy further recommends that HIV programmes and NTPs should collaborate with other programmes to ensure access to integrated and quality-assured services, including for children and adolescents. Quality statement 1.8 of the Standards for improving the quality of care for children and young adolescents in health facilities recommends that all children at risk for TB or HIV are correctly assessed and investigated and receive appropriate management according to WHO guidelines (77).
Many health care providers at the primary health care level in high TB burden countries have been comprehensively trained on assessing and caring for children with pneumonia, diarrhoea and malnutrition using IMCI and integrated service delivery packages on community case management. These packages are centred on the most common childhood illnesses, such as pneumonia and malnutrition, which have a clinical presentation similar to TB (78, 79). Therefore, they offer an opportunity to strengthen integrated symptom-based screening for TB in sick children aged under 5 years. Specifically, the 2014 WHO IMCI chart booklet (79) caters for referral of children with a cough for more than 14 days, assessment of TB infection among children with acute malnutrition, and TB assessment and TPT among children living with HIV (78, 79).
Several considerations for the implementation of decentralized and integrated family-centred models of care for children and adolescents are included in the WHO operational handbook on tuberculosis. Module 5: management of tuberculosis in children and adolescents (69).
Treatment support
Implementation of the recommendations related to treatment support should enable the provision of people-centred TB services. Treatment adherence interventions that may be offered for people on TB treatment may include material support (e.g. food, financial incentives, transport fees), psychological support, tracers such as home visits or digital health communication (e.g. SMS, telephone) and medicine monitoring (15, 16). Interventions should be selected on the basis of assessment of the individual’s needs and preferences as well as available resources. It is important to involve local schools, including educating teachers and other staff about TB and providing accurate information about infectiousness, the needs of children and adolescents with TB or TB/HIV coinfection, the necessity for frequent visits to clinics, and the importance of taking medicines regularly. This may help to reduce stigma in schools and minimize time out of education. Faith-based organizations and other community groups can also be involved in supporting children and adolescents with TB and their families.
Socioeconomic impact of TB on children, adolescents and families
TB commonly affects people of lower socioeconomic status and worsens poverty through high costs related to treatment and reduced household income. Most children with TB develop it after contact with an adult family member with active infectious pulmonary TB (PTB). A high number of TB notifications in children indicates an ongoing adult epidemic (80). TB in the family threatens household income and financial security.
Some examples of the impact of TB on children include dropping out of school following parental bereavement from TB or leaving school to go to work to maintain household income (81). TB in childhood or adolescence may also disrupt or delay schooling and impair growth (82). A recent scoping review reported that time spent caring for a child with TB had impacts on family spending, nutrition and education, and overall reduced household income – all of which were associated with lowered family well-being.⁴⁰ In addition, perceived and enacted stigma had practical implications for TB diagnosis, clinic attendance and treatment, and other psychosocial impacts beyond stigma, including breakdown of parental relationships. School disruption, food insecurity and a lack of social protection have also been reported for children and adolescents with TB based on an analysis of national TB patient cost surveys.⁴¹
5.3 Models of service delivery for people with TB, HIV and comorbidities
Models of service delivery for people with TB and comorbidities range from the least integrated, where stand-alone disease-specific providers refer patients to the relevant specialist services for comorbidities, to the most integrated, where all services across the cascade of care for TB and key comorbidities are provided in a “one-stop-shop” by one health care worker (83, 84).⁴² Services may be provided at different levels of the health system, depending on the availability of comprehensive primary care and the degree of decentralization of the respective services. In some settings, TB services may be decentralized to the primary care level, while services for comorbidities such as diabetes and mental disorders may be available only at the secondary care level. In this situation, the degree of integration can be increased only if diabetes and mental health services are also decentralized closer to the end user (22). The provision of integrated care and comprehensive services for people with HIV-associated TB as close as possible to where they live has long been a focus of WHO policy documents. Such efforts should include integrating services for the prevention, diagnosis, treatment and care of TB and HIV into maternal and child health services, including the prevention of parent-to-child transmission of HIV, and treatment centres for drug dependency where applicable (76).
Within these models, care may be provided by separate specialist health care workers who refer patients to different services according to established pathways. Alternatively, multidisciplinary teams comprising professionals with a mix of skills, including medical and nonmedical, that are required to meet the needs of the end user, may provide coordinated care (85). Care can also be provided by one health care worker for both TB and comorbidities, where the expertise is available (e.g. for TB and HIV) (84). All models of care may be strengthened by the engagement of community health care workers, outreach teams and peer supporters.
5.4 Private-sector involvement in TB care
In many high TB burden countries, the majority of people seek treatment from private providers not linked to the public health care system (86). Private health care providers are an entry point to TB care and treatment (86–88). However, people with TB may not have good-quality TB services if the NTP does not cooperate with the private sector. Health care providers in the private sector may not be provided with information about TB or trained in the up-to-date guidance on TB diagnosis and treatment, including the use of child-friendly formulations. Additionally, patients managed in private health facilities and services are often not notified to the NTP. A wide range of private health care providers exist in different settings, and the services they provide vary. It is important for NTPs to recognize the different private health care providers in the community and work with them to improve the services TB patients are receiving. Private health care providers should particularly be educated on TB – including TB prevention, screening, diagnosis, treatment and care – and should understand the importance of mandatory reporting (67). Working with professional organizations and nongovernmental organizations who also work with the private sector may help to build relationships with the private sector in providing TB care.
5.5 TB and health emergencies
Health emergencies, such as the COVID-19 pandemic, are associated with a disruption in health service delivery, either directly due to the focused attention given to the emergency or indirectly due to the actions taken to control the emergency.
The COVID-19 pandemic has reversed years of progress in providing essential TB services and reducing the disease burden of TB. There has been a large global drop in the number of people newly diagnosed with TB. Reduced access to TB diagnosis and treatment has resulted in an increase in the number of TB-related deaths.
Indirect impacts of health emergencies, such as reduced household income, increased poverty, food insecurity, malnutrition, missed health checks, missed vaccinations and missed work or schooling, may affect TB diagnosis and care.
In May 2021, WHO updated its information note on COVID-19 – considerations for tuberculosis (TB) care to guide countries on approaches to maintaining TB services (89). For instance, both COVID-19 and TB have respiratory symptoms, which provides an opportunity to diagnose both COVID-19 and TB (90).
Programmes should make sure that there are enough stocks of TB preventive therapy for the predicted increased need for this therapy resulting from people with undiagnosed TB and increased associated exposure because of COVID-19-related lockdowns. NTPs should ensure that supplies of TB medicines are not interrupted and that people with TB are provided with adequate refills to enhance treatment completion and minimize frequent trips to health facilities, where there may be an increased risk of infection from COVID-19. This may be achieved via multi-month dispensing or community delivery of TB medicines. Efforts should be made to ensure that neonatal and infant Bacillus Calmette–Guérin (BCG) vaccination continues uninterrupted.
40 Atkins S et al., unpublished, 2022.
41 Nishikiori N et al., unpublished, 2022.
42 The models of care described here are categorized according to where a person first seeks care, and according to the degree of integration. They are not prescriptive; national programmes should define the models that best enable the provision of quality-assured comprehensive services as close as possible to the end-user.