Controlling multidrug and extremely drug-resistant tuberculosis (M/XDR-TB) poses a grave challenge to public health, globally. Studies repeatedly show that effective M/XDR-TB management goes beyond strategies recommended in global TB control plans, uniformly pointing to patient-centred care as critical to progress in controlling the epidemic. We aim to describe patient-centred care in M/XDR-TB management in Peru, which presented a context where M/XDR-TB remains a persistent problem, even with increased capacity for diagnosis, decreased costs of treatment, and increased financial and human resources.
We used a case-based study design, purposively selecting urban and rural sites with some of the highest M/XDR-TB prevalence in Peru, employing multiple qualitative data sources: 58 M/XDR-TB patient interviews, 5 provider focus groups, and observations in 8 facilities, which we compared for triangulation and verification. Current M/XDR-TB strategy recommendations, health systems factors, and social determinants were the primary parameters in the analytical framework. Our approach emphasizes patient voices to identify the current status and challenges in providing patient-centered care for M/XDR-TB.
Overwhelmingly, patients were demoralized during the M/XDR-TB diagnosis process. Several factors contributed to fear, frustration, and depression, highlighting the crucial need for psychosocial support. Because CHWs and community outreach were available in one site and not the other, we could identify how these services made critical positive contributions to patient experiences. CHWs as part of M/XDR-TB management and care contributed to patient-centredness and to disease control by: 1) Supporting patients to complete treatment by offering more convenient DOT and providing ongoing psychosocial support; 2) Reducing primary transmission of M/XDR-TB and diagnosis delays with active contact tracing, case finding, and patient education.
Our findings reinforce that it is not direct observation of drug ingestion that is important for TB control, but the continuous support from the health system and community that can be conveyed through regular DOT contacts. Patients need interaction, not observation. If TB programs can provide the right kind of patient-centred DOT - flexible, personal, and convenient - patients say that psychosocial, economic, and motivational barriers to successful M/XDR-TB management are diminished.