When a 25-year-old cashier in a supermarket developed all classic symptoms of tuberculosis, he chose to take over-the-counter medicines from a local chemist for several weeks instead of visiting a hospital. This even when he had a history of incomplete TB treatment, and his two brothers were undergoing treatment for the virulent infection at that time. From the onset of symptoms to being started on treatment for extensively drug-resistant (XDR) TB that he was eventually diagnosed, it took nearly six months.
In another case, a 24-year-old woman who developed fever, cough, loss of appetite, and chest pain, was first treated for malaria and typhoid by a local doctor before she was suspected of TB. By the time she was classified as XDR, 11 months had passed.
These are narratives from a recently published study that has highlighted the varied health-seeking behaviour of drug-resistant TB patients. From self-delay to scattered healthcare facilities, TB patients go through a tortuous journey which often pushes them to default in treatment.
One-stop system
“The healthcare is extremely fragmented and patients require help to navigate it. Without help, they get lost. The running around, dealing with the side effects of the medicines, and the confusion around the treatment eventually result in patients dropping out of treatment,” said Dr. Nerges Mistry, director, Foundation for Research in Community Health, and co-author of the study.
“TB needs one-stop system of care,” Dr. Mistry said. Published last week in the scientific journal PLOS ONE, the study ‘Such a long journey: What health seeking pathways of patients with drug-resistant tuberculosis in Mumbai tell us’ tracked the journey of 46 drug-resistant patients in Mumbai’s 15 high-burden TB wards. The patients, who were taking treatment in public and private sector, were interviewed by researchers between February and June 2017.
The research showed that all the 46 patients tread a delayed route to get treatment. The researchers also said some patients travelled up to 650 km within the city limits, from symptoms to treatment.
In need of remedy
According to the study, the TB care pathway involves many providers and facilities and a patient often goes to multiple providers before getting the right diagnosis or treatment.
“Delay in diagnosis and treatment initiation is often attributed to such patterns of health seeking,” the study said. It also said patients are not ‘shopping’ for treatment but going back and forth between facilities and providers in search of a remedy.
Failure of healthcare
The study showed how multi-drug resistant (MDR) TB is often addressed as ‘big’ TB and people still have low awareness of the disease.
The study cited an example of a patient who had completed TB treatment in the past but was diagnosed with drug-resistant TB. The patient told the researchers that she was under the impression that once a patient completes treatment, he or she is completely cured. “These narratives highlight failures of the health system in disseminating clear and complete information in a form which the community can comprehend easily, without raising fear and panic,” the study said.