Finding the missing millions affected by tuberculosis is one thing; treating them is another

Ashley Cooper
June 30, 2019, 9:18 p.m.

Of the 10 million people affected and 1·6 million people killed by tuberculosis each year globally, the largest number of these patients—including the largest number of multidrug-resistant cases—are in India. In his seminar, Challenges and opportunities for engaging India's private health sector in tuberculosis care at the London School of Hygiene and Tropical Medicine (London, UK), Prof Madhukar Pai, head of McGill International Tuberculosis Centre at McGill University (Montreal, QC, Canada), painted a detailed picture of India's tuberculosis health-care landscape.

The country's national tuberculosis control programme reports the directly observed treatment, short course (DOTS) coverage to be high, but a 13-country patient pathway analysis found approximately 60% of patients with tuberculosis in India are seeking care in the private sector, rather than the central public health-care system. Fewer than 10% of all cases reported to the national tuberculosis control programme are from the private sector. Pai describes these patients as being in an invisible layer of the health-care system—the missing millions. He says this private sector, which he defines as any non-government health care (by a qualified or non-qualified practitioner), is India's blind spot: a market that is fragmented, heterogenous, privatised, and unregulated.

Pai suggests part of the reason these millions remain missing is because patients are bounced between health-care providers along a long, complex care pathway. On average, a patient will see three different providers, over an average of 2 months, before tuberculosis is detected and diagnosed. Additionally, Pai says that leaky cascades of tuberculosis care, irrespective of the type of tuberculosis or country, are the norm. Even in India's public sector, almost half of patients with tuberculosis are lost to follow-up before diagnosis, and only one in ten patients with multidrug-resistant tuberculosis complete treatment.

To address the cause of these issues, which Pai says screams of poor-quality care, he and others established the Quality of Tuberculosis Care (QuTUB) project. QuTUB was designed to assess health-care provider training and quality of care in both the public and private sectors. Through the QuTUB project, adults were recruited and trained to exhibit a classic case of suspected tuberculosis (ie, 2–3 weeks of productive cough, fever, and weight loss), with all patient details and histories standardised, thus acting as simulated patients. In findings from Mumbai and Patna, from 2652 incognito visits by simulated patients (representing four different cases of tuberculosis) to 1203 health facilities, only 959 (37%) of 2602 interactions were handled correctly, according to what Pai describes as a lenient definition of correct management. The study found average provider quality to be low, with undertesting for tuberculosis being the dominant finding. The proportion of practitioners who referred patients to another practitioner (private or public) was also low, and antibiotics and medicines were the main treatments. The study found that provider qualification mattered: formally trained doctors were about three times better at correct treatment management. This simulated patient work describes the what, but not the why of practitioners' treatment choices. Pai says this gap between knowledge and practice needs to be addressed, but that it is not one that can simply be filled by education. He says it is first necessary to understand the motivations of private practitioner decision making, before help can be given to improve their practice.

As reported in the Lancet Commission on tuberculosis, optimising engagement of the private sector in India could prevent 8 million deaths by 2045. This optimisation will require serious national financial commitment and changes to the relationship between the public and private health-care sectors, as well as reimagining of the tuberculosis treatment toolbox. In his second seminar of the day, Reimagining TB care, at the Institute of Child Health at University College London (London, UK), Pai discussed the failure of imagination that has led to the need for this reimagining.

Pai's ideal tuberculosis care system contains a vaccine, applications to encourage people to seek care earlier, rapid triage tests, rapid diagnostics and drug susceptibility testing, sequencing confirmation, short drug regimens, digital adherence support tools, and patient support and direct benefits. He says many innovators have the potential to contribute to the different products needed to fill this reimagined space.

Tuberculosis care also needs to be re-focused, this time on the patient. The current system is designed from a health system perspective and is aimed at disease control. The absence of a patient-centred focus is exemplified by the de-empowering process of the DOTS system. Pai explains that the kind of help that patients with tuberculosis say they are looking for is often to be found outside of the health-care system: for example, communication via modes that patients use on a daily basis (eg, WhatsApp or WeChat), having care close to home, pre-test counselling, shortest non-toxic drug regimens based on drug susceptibility testing, individualised treatment support, peer support and mental health care, and rehabilitation after surviving tuberculosis. Circling back to his first seminar, Pai says the final thing that is needed in this reimagined space is improvement in the quality of tuberculosis care. It cannot be an added afterthought.


Source: The Lancet Respiratory Medicine