Despite the setbacks during the pandemic, the National TB Elimination Programme has made long strides in addressing tuberculosis in the country. The programme remains a basket of interventions focusing on detection, treatment, and system-centric models to ensure adherence to the regimen. While these are critical interventions to identify, track and treat patients effectively, they cannot address the immense challenges faced by the patients and their communities, especially those that pertain to improving patients’ capacities to complete treatment and actively reducing the rates of the social spread of the disease.

 

Not to say that the programme does not recognize the patient-centred challenges. However, the ongoing efforts have not been effective enough to meet the challenges because they do not place the patient at the centre of TB care and have a limited understanding of the patient’s journey and experiences through TB care. So, what do I need as a TB patient? I need to know that my cough, which has lasted for more than two weeks, requires a sputum test, which I can get tested free-of-cost at my local primary health centre. If the disease debilitates me, I need economic support and adequate nutrition. If I have comorbidities, then I need help managing them. I need my community to not discriminate against me because of my disease and my family by my side supporting me emotionally to deal with the duration of treatment and side effects. I need timely information on every doubt that plagues me, and finally, I need my family not to be infected.

 

These are easier listed than achieved, though. Some of the continuing challenges that the patient faces have been collated from the literature and have been presented below:

 

• Gaps exist in knowledge, attitudes and practices: Despite the advocacy communication and social mobilization strategy being an integral part of the national programme, gaps continue to live in knowledge (long-standing cough is TB, diagnostics is free), attitudes (approach a private practitioner for cough treatment) and practices (appropriate cough etiquette, means of disposing of sputum) around TB. The programme carries out screening of families and contact tracing. However, primarily owing to limited awareness and demand, prophylaxis for children is weak.
• Stigma impedes and delays treatment: The stigma is fed by the knowledge that TB is a communicable disease. Talking points such as how two weeks of treatment makes the patient non-communicable, or that those with extrapulmonary TB are not infectious are not an integral part of the communication strategy.

• Reaching migrants remains a conundrum: Workplace communities are reached in a limited way by the system. This is expanding; however, there is a need to work both with formal sectors and informal collectives to ensure prevention, access and services. Migrant communities have specific challenges which include a lack of information on diseases and facilities in their mother tongue. Their mobility within the city and between city and rural areas deters access to care and follow-up.

• Economic, nutritional and emotional support suffer from implementation gaps: The NIKSHAY Poshan strategy, which provides direct bank transfers to patients, suffers from technological delays across the country. This often results in the patient receiving financial support at the end of the treatment instead of during the treatment. Multi-sectoral coordination to link poor TB patients and families to existing welfare schemes from departments other than health is limited. (for example, each urban local body dispenses welfare measures in the form of livelihood support and educational support)

• Community-level support not leveraged adequately: Community-based organizations have not been engaged extensively by the system. For example, while there is an attempt to engage the Mahila Arogya Samitis in urban areas, the effort does not extend to the National Urban/Rural Livelihood Mission groups. Reaching men through women’s groups is also a challenge, and it will be essential to map community collectives best suited to support TB patients.

• Empowering families is not part of the strategy: Family capacities to support the patient has not been cultivated adequately and should include cough etiquette, nutritional knowledge, ensuring adherence, sputum disposal and addressing comorbidities.

 

How do we pivot to a patient-centric TB care model?

 

This would require a foundational understanding of patients' challenges and the moral nature of support that would enable them to overcome those challenges. Radically new pathways to solving the challenge of TB may include exploring the chain of cough and respiratory clinics; institutional mechanisms for ensuring multi-sectoral actions for the mapped TB patients; conditional loans that support patient and family needs through treatment such that they incentivize progress; family-centric approaches; patients as catalysts for change (the national programme is currently scaling this); engaging the appropriate community collectives to support and destigmatize the disease and connecting migrants with app-based information systems and services.

 

Primary health care can be truly comprehensive when people are at the centre of its design. This World TB Day, let us pivot to patient-centric TB care!

 

KEYWORD(S)

TB Patient care, Treatment plan, Stigma, prophylaxis, community-led support