How far do tuberculosis (TB) patients travel in the course of treatment? Anywhere from 86 to 650 km, according to an ongoing study by the Mumbai-based Foundation for Medical Research (FMR). By understanding the long distances travelled by drug-resistant TB patients in Mumbai (from the onset of symptoms to getting the right treatment) the study seeks to delve into why patients have to travel. The key causes, it emerges, are ‘doctor shopping’ (a practice of seeing multiple doctors for the same illness) and India’s fragmented health-care system. The study will be submitted for publication in the near future.
Says Dr. Nerges Mistry, Director, FMR: “There are various factors that force patients to travel. Many patients travel on their own will. Sometimes they are in denial and want to confirm the diagnosis and sometimes they are sent from one health provider to another for investigations and treatment. The factors, therefore, could be administrative, systemic or simply one’s own will... We have so far seen that patients travel anywhere between 86 km to 650 km within city limits from the onset of symptoms to treatment.”
Similar studies have shown that travel time and distance negatively impact the well-being of patients. A study, in 2016, published in the British Medical Journal , said that the farther patients lived from the health-care facilities they needed to attend, the worse their health outcomes. Another study published in 2017, in the WHO South-East Asia Journal of Public Health , looked at depression and said that it was important to have a collaborative-care model and integrated management for mental health. Medical experts are now rooting for an integrated approach towards TB and other diseases, whereby there can be coordinated and comprehensive treatment under one roof.
Says Dr. Mistry, “Patients have various co-morbidities. Some may require consultation for their eyes while others may need a ear check-up. A one-stop design where they can get some solutions under one roof is necessary.” She adds that a redesigning of the system on these lines is essential not only for TB patients but also for patients with other diseases.
In a study published last month, FMR researchers have already looked at various health-seeking pathways of patients with drug-resistant TB in Mumbai. Dr. Mistry and other authors tracked the journeys made by 46 drug-resistant patients in Mumbai’s 15 high burden TB wards. The study is to delve into the journeys these patients make in terms of the distances they travel.
Says Dr. Yatin Dholakia, TB specialist and secretary of the Maharashtra State Anti-Tuberculosis Association, “It is very essential to look at the reasons in order to find solutions. The distance travelled to access diagnosis and treatment often pushes patients to drop out mid-way. This is dangerous in TB.” Typically, he says, a patient first goes to the nearest provider when symptoms arise. He continues, “If the local health-care provider is not competent enough, the patient goes to another doctor. The patient travels further for diagnostics as well. A comprehensive delivery set-up where one can access diagnostics and treatment is thus very important.”
Dr. Dholakia, who has been in practice for 35 years, explains: “A lot has changed over the years. Earlier, we had very few Gene Xpert machines (a diagnostic) to detect drug-resistant TB but now there are many more. There are public-private partnership models for TB diagnosis that have been rolled out. Bedaquiline, the newest anti-TB drug in 50 years, is now being given in the out-patient department (OPD) instead of hospitalisation. All these measures have brought TB treatment closer home. But if you ask me whether it’s enough, I would say much more needs to be done.”
TB activist Ganesh Acharya agrees. “TB patients are often tossed from one hospital to another simply because they have TB. Many patients terminate treatment because they get frustrated with referrals,” he says, citing an example of a 51-year-old transgender with TB. The person developed fever and was rushed to the civic-run Sion Hospital in Mumbai. When the doctors learned about her TB status, they shifted her to TB hospital in Sewri, which is a dedicated facility for TB. At Sewri, doctors suspected that she could have a brain condition but as a CT scan and MRI were unavailable, she was referred to the civic-run KEM hospital in Parel. There, the CT scan was clear and the doctors insisted that the patient be taken back to the TB facility.
Says Acharya, “All this happened in a span of 36 hours while the patient was critical and on oxygen support. Now one can imagine what happens to patients who are walking around and not visibly critical.”