Drug-resistant tuberculosis (DR-TB) is a global health threat. In 2023, an estimated 400 000 people developed DR-TB worldwide.¹ Globally, treatment success rates for people with DR-TB were 68% in 2021, the latest year for which treatment outcome data are available.¹ These treatment outcomes fall short of the 75% treatment success rate target set by the World Health Organization (WHO), despite recent advances in DR-TB diagnostics and the introduction of shorter all-oral treatment regimens. Drug-resistant tuberculosis remains a threat to TB control and achievement of the End TB strategy by 2030.²

Drug-resistant tuberculosis occurs when Mycobacterium tuberculosis bacteria become resistant to the first-line drugs used to treat TB.³ First-line drugs to treat TB are generally safer, more affordable and have a better side effect profile compared to second-line drugs used to treat DR-TB.³ It was initially thought that DR-TB was because of acquired resistance in TB patients receiving inappropriate or inadequate treatment because of poor adherence, but community transmission is now considered to be responsible for the increasing burden of DR-TB.⁴ There are different types of DR-TB: Rifampicin mono-resistant TB is resistant to rifampicin but susceptible to isoniazid; multi-drug-resistant TB (MDR-TB) is resistant to both isoniazid and rifampicin. Pre-XDR TB is MDR-TB in conjunction with resistance to any fluoroquinolone (levofloxacin or moxifloxacin). Extensively drug-resistant TB (XDR-TB) is MDR-TB with resistance to the fluoroquinolones and either bedaquiline or linezolid.⁵

The human immunodeficiency virus (HIV) pandemic has fuelled drug-susceptible (DS)-TB and DR-TB, and people living with HIV (PLHIV) are at a higher risk of developing both DS- and DR-TB. Results of a systematic review and meta-analysis have shown that the risk of developing MDR-TB is 24% higher among PLHIV compared to HIV-negative individuals.⁶ The risk of mortality is increased in those with DR-TB who are co-infected with HIV.⁶

Drug-resistant tuberculosis is a serious disease requiring complex treatment with expensive and toxic medications, with a high risk of serious adverse events and sequalae.⁷ In addition, many people with DR-TB have to contend with additional barriers to care, including limited resources, poverty, overcrowding and inadequate access to health facilities,^5,6,7 which contribute to poor retention in care. Moreover, they may experience psychosocial challenges such as stigma, discrimination and anxiety.^{8,9,10,11,12,13} These numerous challenges can contribute to suboptimal retention in care.

In recognition of these coinciding challenges, WHO introduced patient-centred care as one of the three pillars of its End TB Strategy, with the aim of facilitating high-quality care to TB patients throughout their treatment journey.¹⁴ Patient-centred care is defined as ‘care that is respectful of, and responsive to individual patient preferences, needs, and values’ and which ensures ‘that patient values guide all clinical decisions’.¹⁵ Four types of support are outlined: (1) informational support, which provides information about DR-TB disease and its treatment to patients and their families and includes training, education and counselling; (2) emotional support, which strengthens self-esteem through empathy, trust, encouragement and care; (3) companionship support, which makes an individual feel that he or she belongs to a social network that can be relied on for certain needs; and (4) material support, which includes the provision of any commodities, including financial subsidies.¹⁶

In this article, we review patient-centred interventions that were implemented to support DR-TB patients during treatment. We describe the type/s of patient-centred support offered and treatment outcomes, evaluate the evidence strength and consider the limitations and implications of these interventions for supporting DR-TB patients and their families.

We conducted a scoping review of published, peer-reviewed and grey literature to identify and describe patient-centred care interventions implemented globally to improve treatment outcomes for DR-TB. We followed Arksey and O’Malley’s framework for scoping reviews,¹⁷ to answer the research question: what patient-centred interventions have been implemented for DR-TB to improve retention in care and treatment outcomes during patients’ treatment journey? To report our scoping review process and findings, we followed the Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for scoping reviews (PRISMA-ScR).¹⁸ We classified the types of support that emerged from the studies according to the WHO’s definition for patient-centred care, that is material, emotional, companionship, or informational support.¹⁶

In the following sections, we categorise the types of support included in the interventions we reviewed, as defined by the WHO. Most interventions were multifaceted and included more than one type of support.

Integrated, patient-centred care is one of three pillars in the End TB Strategy and includes the provision of patient-centred interventions.² In this review, we aimed to identify and describe the patient-centred care interventions that have been implemented to support retention in care and treatment outcomes of people diagnosed with DR-TB. In this systemic review, we identified 14 studies detailing patient-centred interventions that supported people receiving DR-TB treatment and the impact of these on treatment outcomes. While 13 studies were of moderate quality,^{20,21,22,23,24,25,26,27,28,29,30,31,33} 1 study was of strong quality.³² However, 13 of the 14 interventions were implemented on a small scale, and none of these interventions were rolled out more broadly. Only 6/14 studies (43%) were published after the release of the WHO’s patient-centred strategy in 2015, despite the urgent need for effective patient-centred approaches to DR-TB management. This suggests a potential gap in research and implementation of patient-centred care strategies. This gap suggests a potential delay in the uptake of WHO’s recommendations in research and in practice, highlighting the need for further implementation and research efforts to accelerate the development and evaluation of patient-centred care models for people with DR-TB.

The interventions included material, informational, emotional and companionship support, and all were reported to have a positive impact on DR-TB treatment outcomes by either improving adherence or improving treatment success rates. These findings suggest that patient-centred interventions can play a role in improving DR-TB treatment outcomes. These findings align with WHO’s emphasis on addressing individual, economic, health system and social factors that influence treatment adherence and suggest that providing patient-centred care can effectively mitigate factors contributing to poor adherence, supporting WHO’s recommendation for comprehensive care for DR-TB patients.¹⁶

Material support was found to be a crucial component of patient-centred care, and it was the most common type of support provided (n = 12).^{20,21,23,24,25,26,27,28,29,30,32,33} Wen et al.⁸ had found that material support may enhance DR-TB patients’ ability to effectively leverage other forms of social support, and the provision of material support to patients from economically disadvantaged backgrounds better motivates them to adhere to treatment. However, implementation of material support has some implementation challenges, and its effects have not been fully understood by other studies. In a South African randomised control trial (RCT) providing cash vouchers for people with TB, it was found that nurses in intervention clinics failed to provide vouchers to over a third of patients because of personal biases concerning eligibility and only gave out vouchers at the end of the month, undermining the effectiveness of the intervention.^35,36 Previous studies have explored the impact of material incentives and enablers on TB treatment outcomes. A systemic review by Lutge et al.³⁷ suggests that these incentives may have short-term benefits on clinic attendance, particularly among vulnerable populations such as drug users, ex-prisoners and the homeless. However, the evidence is insufficient to determine their long-term effectiveness in improving treatment adherence.

Similarly, a review by Boccia et al.³⁸ highlighted significant knowledge gaps in implementing cash transfer interventions for TB patients, underscoring a need for further research. A comprehensive review by Wells and Severn,³⁹ of 11 systemic reviews and 3 overviews, found neutral to positive results for financial incentives, with no evidence of detrimental clinical effects. None of the studies included in our systematic review documented the challenges experienced with cash handouts. In our review, the importance of material support, specifically cash transfers, was underscored by several studies, which demonstrated its synergistic effect when combined with other forms of patient-centred support.^{20,21,22,24,25,26,27,29}

Nutritional support emerged as an important aspect of material support, with one study demonstrating an association between nutritional support and decreased mortality.⁴⁰ In a study by Bhargava et al.³² where some participants with TB had a high prevalence of undernutrition, the nutritional support delivered to patients in the form of food rations and micronutrient pills as an adjunct to anti-TB treatment resulted in significantly improved treatment outcomes and weight gain compared to the National TB Program (NTP) cohort. The mean weight gain in patients receiving nutritional support was substantial, with a weight gain of 4.8 kg, 1.5 times higher than the NTP cohort. The primarily food-based nutritional support intervention was feasible, low cost (less than $0.5 per day) and well accepted by patients.

Several studies (n = 7) in our review have highlighted the importance of nutritional support in improving treatment outcomes, either as cash to procure food^20,22,25,29 or as direct food supply.^{22,25,26,29,32} The provision of nutritional support is particularly critical in resources-constrained settings, where food insecurity can exacerbate poor TB treatment outcomes.⁴¹ Undernutrition has been significantly associated with poor treatment outcomes, mortality and a longer period to sputum conversion among people with DR-TB,⁴² yet the existing programmatic guidance for nutritional support for people with TB is sparse.⁴³

The findings of this review suggest that NTPs should consider integrating nutritional support in the DR-TB management programme.⁸ Future research should continue to explore the optimal delivery mechanisms and nutritional interventions to maximise treatment outcomes and promote patient-centred care of DR-TB patients. The importance of a multidisciplinary team approach in providing comprehensive support to DR-TB patients was also emphasised by this review. Effective patient-centred care interventions require collaboration among medical professionals, psychologists, social workers, CHWs, family members, government departments and community members.^21,22,24,25 This coordinated effort can ensure holistic care and address the complex needs of patients with DR-TB.

The findings of this review have implications for policymakers, healthcare providers and researchers. Firstly, they emphasise the need to integrate patient-centred care support into DR-TB treatment protocols. Secondly, they highlight the importance of mobilising diverse stakeholders to provide comprehensive care. Finally, they suggest areas for future research, including the development and evaluation of innovative interventions and the examination of context-specific factors influencing intervention effectiveness.

This scoping review has limitations. Firstly, only 14 articles were eligible for inclusion. Secondly, there was only one RCT. More RCTs are needed to provide high-quality evidence on the effectiveness of patient-centred care support for DR-TB patients. Thirdly, some studies did not report treatment outcomes at baseline, which limited an assessment of the impact of intervention. Finally, most interventions (n = 13) were implemented on a small scale and in only one setting, which does little to inform implementation on a larger scale.

This review provides evidence of the value of patient-centred support interventions to improve retention in care and treatment outcomes of DR-TB patients. There is evidence that material support combined with other forms of social support can improve DR-TB treatment outcomes.

The provision of nutritional support is particularly critical in improving treatment outcomes, especially in resources-constrained settings and where the patients suffer from malnutrition.

Future research should prioritise RCTs with robust evaluation and cost-effectiveness analysis together with documentation of implementation challenges experienced with more extensive implementation of these interventions, and how these were addressed, to contribute to the evidence needed to persuade NTPs to invest in such strategies. Given the impact of nutritional support on treatment outcomes recently reported, a nutritional intervention may be a starting point for NTPs.