Of the estimated 10.4 million tuberculosis patients in 2016, only 6.3 million patients were detected and officially notified, leaving a gap of 4.1 million. These 4.1 million patients are considered 'missing.' Where are they and why are they missing?
Valuable clues are to be found in a recently published special supplement in the Journal of Infectious Diseases (edited by Christy Hanson and Daniel Chin from the Bill & Melinda Gates Foundation). This supplement includes a series of patient pathways analyses (PPA), a technique that describes the steps that people with TB take from the initial care seeking to diagnosis, treatment and cure. The results of a PPA reveal programmatic gaps in care seeking, diagnosis, treatment initiation, and continuity of care. They complement the information obtained by cascade of care analyses, which provide quantitative information on where exactly patients are lost in the continuum of care.
The figure below provides a summary of a combined 13-country patient pathway analysis. Countries include India, Indonesia, China, Nigeria, Pakistan, South Africa, Bangladesh, Philippines, Democratic Republic of the Congo, Ethiopia, Myanmar, Mozambique, and Kenya.
This 13-country PPA provides important insights into why patients are missed:
1. About 60% of all TB patients seek care in the formal or informal private sector.
2. More than 70% of TB patients initiate care at the community (L0) or primary healthcare clinic (L1) level. A majority of these community and primary care facilities have no capacity to diagnose TB, and this results in a big diagnostic gap, and long diagnostic delays.
Recent analyses of cascade of care in South Africa and India offer additional data on why TB patients are missing and why TB continues to kill 1.7 million people each year. The figure below is the cascade of care for all TB patients in the Indian public sector. Only about 60% of the patients were even diagnosed, and only about 40% reached the finish line.
The figure below is the cascade of care for drug-resistant TB in South Africa. This analysis shows that only 1 in 5 patients with drug-resistance have successful treatment outcomes in South Africa.
Globally, the recent Stop TB progress report on 90-90-90 TB targets show similar trends - only 1 in 2 patients with drug-sensitive TB get adequate diagnosis and treatment, while 1 in 5 patients with drug-resistant TB get adequate care. Broken care cascades result in poor quality TB care, with disastrous consequences for patients.
In summary, the TB community has its work cut out - we need to make sure our TB services are better aligned with where patients are, where they seek care, and acknowledge their values and preferences so that care is truly patient-centric. We also need to address the big gaps in quality identified in these analyses, and make quality improvement an integral component of all TB care systems.