Book traversal links for 3. Models of care for children and adolescents exposed to TB or with TB disease
This section contains two new recommendations on the implementation of decentralized models of care and integrated family-centred models of care to improve both case detection and the provision of TB preventive treatment (TPT).
Capacity for paediatric TB is often highly centralized at secondary/tertiary levels, where children may present as seriously ill, after delays in accessing care. At higher levels of care services are often managed in a vertical, non-integrated way (135, 136). Health-care workers at the primary health care (PHC) level may have limited capacity for and confidence in managing paediatric TB, although this is the level at which most children with TB or at risk of TB seek care (136). In addition, TB screening is often not systematically part of clinical algorithms for child health – such as integrated management of childhood illness (IMCI) or integrated community case management (iCCM). Private-sector providers play an increasing role as the first point of care in many countries (137). Nevertheless, there are many missed opportunities for contact-tracing, as well as for TB prevention, detection and care, because of weak integration of child and adolescent TB services with other programmes and services.
Decentralization and provision of family-centred, integrated care are highlighted as one of 10 key actions in the 2018 Roadmap towards ending TB in children and adolescents (136). The Roadmap highlights that consistently and systematically addressing gaps and bottlenecks along children’s and adolescents’ pathway through TB exposure, infection and disease can lead to reduced transmission of TB, expanded prevention of TB infection and earlier TB diagnosis with better outcomes. Achieving this continuum of care requires collaboration across service areas, practice disciplines and sectors, and community engagement, as well as decentralization and integration of service delivery at the PHC level (136).
The Roadmap suggests actions to integrate child and adolescent TB into family- and communitycentred care, including by:
- strengthening country-level collaboration and coordination across all health-related programmes engaged in woman, adolescent and child health – especially reproductive health, maternal, neonatal, child and adolescent health (MNCAH), nutrition, HIV, primary and community health – with clearly defined roles, responsibilities and joint accountability;
- decentralizing and integrating successful models of care for TB screening, prevention and diagnosis with other existing service delivery platforms for maternal and child health – such as antenatal care, iCCM and IMCI – as well as other related services (e.g. HIV, nutrition, immunization);
- ensuring that children and adolescents with other common co-morbidities (such as meningitis, malnutrition, pneumonia, chronic lung disease and HIV infection) are routinely evaluated for TB;
- ensuring that community health strategies integrate child and adolescent TB education, screening, prevention and case-finding into training and service delivery activities; and
- increasing awareness of and demand for child and adolescent TB services in communities and among health workers (136).
The set of PICO questions examined the impact of decentralization¹⁵ and of family-centred, integrated approaches¹⁶ of child and adolescent TB services on case detection in children and adolescents who present with signs and symptoms of TB. The questions also examined the impact of these approaches on coverage of TPT among children and adolescents.
Justification and evidence
a. In children and adolescents with signs and symptoms of TB, should the decentralization of child and adolescent TB services versus centralized child and adolescent TB services (at referral or tertiary hospital level) be used?
b. In children and adolescents exposed to TB, should the decentralization of child and adolescent TB prevention and care services versus centralized prevention and care services (at referral or tertiary hospital level) be used to increase coverage of TPT in eligible children and adolescents?
c. In children and adolescents with signs and symptoms of TB, should family-centred, integrated services versus standard, non-family-centred, non-integrated services be used?
d. In children and adolescents exposed to TB, should family-centred, integrated services versus standard, non-family-centred, non-integrated services be used to increase TPT coverage in eligible children and adolescents?
Evidence: A systematic review of studies assessing the impact of decentralized, integrated or familycentred care models on TB diagnosis, treatment or prevention outcomes in children and adolescents with TB between 0 and 19 years of age, comprising both children (0–9 years of age) and adolescents (10–19 years of age), was conducted to answer this group of PICO questions. The PubMed, Embase, Web of Science, Global Index Medicus, Global Health and Cochrane Central databases were searched in February 2021, as were the references of 17 related reviews. A total of 3265 abstracts from databases and 129 additional references from related reviews were identified and assessed. Of these, 516 full-text articles were assessed for eligibility, from which 25 comparative studies (7 randomized, 18 observational) were identified; one unpublished observational study was added, making a total of 26 studies. Four studies (1 randomized, 3 observational) were excluded after review because the care model described was community-based treatment support, for which a WHO recommendation already exists (138). Of the remaining studies that were included, 16 had elements of decentralization, five had elements of integration, and three had elements of family-centred care. Four studies had elements of more than one care model of interest but were included only on the basis of their main model – such as either decentralization or family-centred, integrated care. Most studies focused on the 0–14-year age group.
Studies in which the primary intervention was decentralization chiefly assessed diagnosis or case notification outcomes (n=16) (139–154), with fewer assessing TPT outcomes (n=3) (59, 145, 155). In general, interventions that included both strengthening of diagnostic capacity in primary care settings and strengthening links between communities and facilities consistently showed an increase in case notifications and TPT initiations, while interventions that involved only community-based activities did not.
Two studies of service integration were identified (156, 157) as showing limited impact on case notifications of screening in IMCI clinics or co-location of TB and ART services. The two studies of family-centred care (158, 159) showed that the provision of socioeconomic support packages to families affected by TB was associated with increased TPT initiation and completion.
The reviewers noted that, while substantial wider literature on integration and family-centred care is available, evidence for the specific impact on child and adolescent TB outcomes is limited. Some overlap was noted between the integration of TB services into non-specialized settings such as general outpatient or primary care services or decentralization. This was a slightly artificial separation for the evidence review since in practice decentralization and integration into PHC may occur together.
GDG considerations: With regard to the evidence reviewed on the impact of decentralization on TB case detection, the GDG observed that two trials (148, 150) and one observational study of homebased screening (without facility-based strengthening) (153) had fewer diagnoses or notifications among children aged below 15 years in the intervention group compared to the control group, but that none of these differences were statistically significant. The GDG considered that, while there may be a reduction in case notifications at higher levels of care, TB detection may improve if children are seen by a competent clinician at the first point of access (such as at PHC level). The evidence overall was recognized as uncertain. The benefit of increased case-finding and an increased number of children with TB who are initiated on TB treatment was considered to outweigh the concern for overtreatment. Therefore, the undesirable effects of case detection were considered trivial. The GDG discussed the potential risks of provision and management of TPT at the peripheral level, including undetected drug-related adverse events such as hepatotoxicity and insufficient capacity to manage these events. In addition, there may be a risk of TB disease being treated with a course of TPT rather than with a complete treatment regimen. All these undesirable events can potentially happen but were considered rare and not of major concern. Therefore, the undesirable effects for TPT provision were also considered trivial. Overall, the GDG agreed that the balance of desirable and undesirable effects probably favours decentralized TB services for case detection and provision of TPT to children and adolescents. The panel noted that differences in the setting and the availability of adequate resources are important considerations.
The GDG also discussed the fact that family-centred, integrated care includes interventions at the household level to identify members of the household who require evaluation for TB disease, TPT, treatment support etc. Some overlap between the integration of TB services into non-specialized settings – such as general outpatient or primary care services and decentralization – was noted. However, this was considered to be a somewhat artificial separation since in practice decentralization and integration into PHC may occur at the same time. Overall, despite a lack of evidence on undesirable effects and low quality of the data, the panel agreed that there is evidence of positive effects of familycentred integrated care. It was suggested that family-centred, integrated care could be an addition to both the standard of care and specialized services which do not have an integration component. Familycentred care (in the sense of family involvement) was highlighted as a core principle of child health care
The GDG noted that setting-specific factors related to the TB burden or the organization of health services may have an impact on feasibility, acceptability and equity. GDG members also pointed out that the initial health system costs for establishing decentralized and family-centred, integrated services may be relatively high (e.g. for infrastructure, human resources, training, equipment, community engagement), but that costs are likely to decrease over time – assuming that people with TB are effectively managed and that TPT is provided at the peripheral level, leading to a reduction in TB incidence. Decentralized and family-centred, integrated services may result in important savings for affected families. Equity was considered an important cross-cutting issue that also has an impact on cost. The GDG highlighted that TPT implementation can be very challenging with high levels of loss to follow-up in programmes implemented at higher levels of the health system, considering that children who are eligible for TPT are not sick. The panel agreed that the decentralization and integration of services can potentially increase equity and enhance the success of the programme and judged that cost-effectiveness probably favours decentralized and family-centred, integrated approaches to both case-finding and the provision of TPT.
While the GDG stressed the importance of taking into consideration the potential impact of stigma when decentralizing TB services for children and adolescents to lower levels, the panel judged that decentralized approaches are probably acceptable to key stakeholders. Overall, decentralized and family-centred, integrated approaches were judged to be feasible to implement, although feasibility may vary depending on factors such as infrastructure, availability of funding and the structure of the national TB programme. However, adequate investment is critical to enable the acceptability, equity and feasibility of decentralized approaches.
Adolescents have a disease presentation that is similar to that of adults and therefore may need different interventions than those for young children. Additional subgroup considerations for adolescents are included in the WHO operational handbook, taking into account their specific healthseeking behaviour and the need for adolescent-friendly services
TB contacts: Provision of TPT has for many years focused mainly on children under five years of age. In 2018, target groups for the provision of TPT were expanded to include contacts of all ages (160). Available data from the global TB database (161) show that coverage of TPT in household contacts is poor – especially in contacts over five years of age.
In children with common illnesses with overlapping signs and symptoms of TB, approaches that integrate TB services in their care can improve case detection and provision of TPT.
These subgroups include:
- children with SAM;
- children with severe pneumonia;
- children living with HIV; and
- children with other chronic diseases
Health system requirements: Training of health-care workers at peripheral levels of the health system is a critical requirement for ensuring that decentralized approaches are implemented adequately. Similarly, resources are needed at the peripheral level – especially initially to establish services. It is expected that, as services are established and effectively implemented, the long-term impact will result in a decrease in TB incidence with an associated reduction in resource requirements. A phased approach may be applied if this is most appropriate in the country or area, depending on the local burden of TB, the availability of domestic or donor funding and the amount of technical and programmatic support.
Factors to consider in decentralizing child and adolescent TB services include: the existing infrastructure (such as baseline health infrastructure, needs for expansion or upgrading); an applicable regulatory framework; financing; the choice between an operational research setting or programmatic implementation; human resource issues (including staffing requirements and human resources development, such as capacity-building/training and consultation skills); monitoring and evaluation; qualitative research into community needs; perceptions (including views on stigma); and suggestions. Decentralization of services to the PHC level requires that child and adolescent TB services are integrated within general PHC services, resulting in possible significant overlap between decentralization and family-centred, integrated approaches.
Contact investigation: Active contact investigation at community and household level is a critical intervention for enhancing both case-finding and the provision of TPT to children and adolescents.
Task-shifting: Decentralization not only concerns the levels of the health system but should ideally also take place within the same structure, by training all health-care providers of all child and adolescent care services in the recognition and management of TB. This so-called task-shifting was mentioned by the GDG as an important implementation factor.
Family-centred and integrated care: Although in child health, care evolves around the family, the concept of family-centred care has not been well defined. Family-centred care is related to the more common concept of patient-centred care. The End TB Strategy (162) states: “Patient-centred care involves systematically assessing and addressing the needs and expectations of patients. The objective is to provide high-quality TB diagnosis and treatment to all patients – men, women and children – without their having to incur catastrophic costs. Depending on patients’ needs, educational, emotional and economic support should be provided to enable them to complete the diagnostic process and the full course of prescribed treatment.” Multiple descriptions exist that include components of support and education based on individual needs, building a patient–provider partnership and participatory decision-making. Family-centred care also includes interventions at household level to identify members of the household requiring evaluation for TB disease, TPT, treatment support and so on. As the concept of family-centred, integrated care may be specific to the setting, one of the first steps in implementation includes clarifying which definition applies to the setting in which the care is to be implemented. Similarly, the implementation strategy varies by setting and needs to be country- or region-specific and informed by social, cultural and societal values.
The package of TB services to be provided should be defined and developed by the national TB programme in close coordination with other relevant programmes, such as through an existing child and adolescent TB technical working group. This package should seek to identify and address capacity needs for national programmes interested in the uptake of proposed interventions, and should ideally be based on family and community perceptions of the ideal family-centred model of care. The package could include community-based models for active contact investigation, identifying children with TB signs and symptoms or exposure as part of routine growth-monitoring services, or an integrated model for IMCI integration, starting with the sick child and identifying signs and symptoms pointing to a high likelihood of TB.
Integration can start within the family by equipping family members with the knowledge to recognize signs and symptoms in order to understand the importance of a history of contact, to know when to seek help at the health-care facility and how to minimize stigma related to TB. High-yield entry points provide a good place to start within the health system. For instance, child and adolescent TB services can be integrated with malnutrition clinics, ANC, the Expanded Programme on Immunization, inpatient sites, adult TB and chest clinics, HIV and general paediatric clinics. TB care should ideally be integrated into general health services rather than being limited to enhanced coordination between two programmes. However, defining an optimal patient flow between services and creating strong links between child health entry points and TB clinics remains essential, especially in facilities where services are physically separated. This is critical for enhancing the quality of services, including the follow-up of persons with TB during the diagnostic evaluation, and also for ensuring the accuracy of recording and reporting. In the early phase, pilot programmes could be considered, and should be evaluated and adjusted as needed and then scaled up.
Factors to consider in designing an integrated approach to child and adolescent TB care include: the existing infrastructure (e.g. baseline health infrastructure, need for expansion or upgrading); the applicable regulatory framework; financing; the choice between an operational research setting or programmatic implementation; human resource issues (including staffing requirements and human resources development such as capacity-building/training and consultation skills); monitoring and evaluation; qualitative research into community needs; perceptions (including views on stigma; and suggestions.
Differentiated service delivery (DSD): DSD is a person-centred approach developed in the HIV programme that simplifies and adapts HIV services across the range of care in ways that both serve the needs of people living with and vulnerable to HIV and optimize the available resources in health systems. The principles of DSD can be applied to prevention, testing, linkage to care, ART initiation and follow-up, as well as to the integration of HIV care, co-infections and co-morbidities (163). This approach is based on the principle that when families are given the choice to interact with the health system, this provides a possible mechanism for integration of child and adolescent TB services within PHC or other programmes. Examples of implementing DSD for children and adolescents with or at risk of TB are provided in WHO’s operational handbook.
Monitoring and evaluation
The move to decentralized, family-centred, integrated services requires careful planning and regular monitoring of implementation against the plan. The capacity needs of national TB programmes for implementing the proposed interventions need to be identified and addressed.
Enhanced data collection on child and adolescent TB potentially takes a substantial amount of additional time, and detailed data collection may be feasible only in specific operational research settings. Programmes generally have registers in place for contact investigation, treatment registration and outcomes, as well as TPT registers. The use of these (preferably electronic) tools is important for ensuring comprehensive management and treatment as programmes move to a more decentralized and family-centred, integrated approach. The use of the tools should be evaluated and enhanced, including through operational research.
It will be important to monitor the number of children diagnosed at different levels of the health system – including the proportion of children who have bacteriological confirmation, the proportion who were clinically diagnosed and the number of children initiated on and completing TPT. Disaggregation of data by sex will be important to evaluate the impact on gender equity. Evaluating the quality of services (covering the quality of all steps in the patient pathway, from screening to diagnosis and treatment) as well as client satisfaction are also important components.
¹⁵ Decentralization: Depending on the standard in the research settings used for the comparator, 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 at which this is currently routinely provided. In most settings, decentralization would apply to the district hospital (first referral level hospital) and/or the primary health care level and/or community level. Interventions for decentralization can include capacity-building of various cadres of health-care workers, expanding access to diagnostic services.
¹⁶ 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 his or her 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 existing service delivery platforms for maternal and child health (such as antenatal care, integrated community case management, integrated management of childhood illnesses) and other related services (e.g. HIV, nutrition, immunization). Other examples include the evaluation of children and adolescents with common co-morbidities (e.g. meningitis, malnutrition, pneumonia, chronic lung disease, diabetes, HIV infection) for TB, as well as community health strategies to integrate child and adolescent TB awareness, education, screening, prevention and case-finding into training and service delivery activities.