Patients pathways to tuberculosis diagnosis and treatment in a fragmented health system: a qualitative study from a south Indian district

Abstract

BackgroundIndia’s Revised National Tuberculosis (TB) Control Programme (RNTCP) offers free TB diagnosis and treatment. But more than 50% of TB patients seek care from private practitioners (PPs), where TB is managed sub-optimally. In India, there is dearth of studies capturing experiences of TB patients when they navigate through health facilities to seek care. Also, there is less information available on how PPs make decisions to refer TB cases to RNTCP. We conducted this study to understand the factors influencing TB patient’s therapeutic itineraries to RNTCP and PP’s cross referral practices linked to RNTCP.MethodsWe conducted in-depth interviews on a purposive sample of 33 TB patients and 38 PPs. Patients were categorised into three groups: those who reached RNTCP directly, those who were referred by PPs to RNTCP and patients who took DOT from PPs. We assessed patient’s experiences in each category and documented their journey from initial symptoms until they reached RNTCP, where they were diagnosed and started on treatment. PPs were categorised into three groups based on their TB case referrals to RNTCP: actively-referring, minimally-referring and non-referring.ResultsPatients had limited awareness about TB. Patients switched from one provider to the other, since their symptoms were not relieved. A first group of patients, self-medicated by purchasing get rid drugs from private chemists over the counter, before seeking care. A second group sought care from government facilities and had simple itineraries. A third group who sought care from PPs, switched concurrently and/or iteratively from public and private providers in search for relief of symptoms causing important diagnostic delays. Eventually all patients reached RNTCP, diagnosed and started on treatment. PP’s cross-referral practices were influenced by patient’s paying capacity, familiarity with RNTCP, kickbacks from private labs and chemists, and even to get rid of TB patients. These trade-offs by PPs complicated patient’s itineraries to RNTCP.ConclusionsIndia aims to achieve universal health care for TB. Our study findings help RNTCP to develop initiatives to promote early detection of TB, by involving PPs and private chemists and establish effective referral systems from private sectors to RNTCP.

Tuberculosis patients not covered by treatment in public health services: findings from India's National Family Health Survey 2015–16

“…TB patients switch from one health service provider to another during the course of treatment . Although this aspect was not captured in this cross‐sectional survey, 7% of the TB patients were found to be accessing care from both private and public health services.…”

Involving private practitioners in the Indian tuberculosis programme: a randomised trial

“…The design of the intervention was preceded by a phase of formative research. A quantitative study explored the extent and nature of PPs collaboration in RNTCP in the district, and qualitative research involving TB patients, RNTCP staff and all types of PPs explored barriers to effective PPM and potential and possible ways to engage PPs. Based on the findings of the formative phase and together with the district TB office, a package of intervention activities was designed: one set of activities, started in September 2014, targeted general strengthening of RNTCP services; another set, started in October 2014, targeted exclusively the PPs in the intervention arm (Box 1].…”

Determinants of delayed diagnosis and treatment of tuberculosis in high-burden countries: a mixed-methods systematic review and meta-analysis

“…The problem for me is the language because I can't speak Thai." [143] Bangladesh [113,114], Brazil [129], Cambodia [115], China [132][133][134], Ethiopia [108][109][110], India [113,[116][117][118][119][120], Indonesia [121,122], Mozambique [111], Nigeria [123], Philippines [124], Russia [135,136], South Africa [137,138,[140][141][142], Tanzania [112], Zambia [125], Zimbabwe [126] Long chains of care seeking through multiple providers and the lack of trust in the health care system providing TB care led to delay in care seeking and TB diagnosis "Government doctor did not show any interest, neither he responded to my questions. They never spoke to me at all.…”

“…It was really a horrible experience to run around there. So, finally we decided and went to private" [120] "We usually try many other methods first and the hospital is the last choice." [115] Bangladesh [113,114], India [113], Nigeria [123], Russia [135,136], South Africa [142], Thailand [143], Zimbabwe [126] Gender-specific factors such as men dominating and owning the decision-making power in family, more economic constraints for women to seek healthcare, and men concealing health issues or denying disease severity by substance (alcohol and nicotine) abuse led to delay in care seeking and TB diagnosis "There are very few women in my community who can afford the costs of transportation to the hospital and to pay the hospital fees."…”

“…These causes were linked to a sense of hopelessness and an inability to improve conditions of one's life." [113] Health system delay Bangladesh [114], Brazil [127,130], China [131,133], Ethiopia [108,109], India [116,120], Indonesia [121,122], Tanzania [112] Poor practice at the health facilities and ignorance of TB led to a delay in TB diagnosis "He had told me to take injections daily and I was taking it as advised. But he did not tell me anything.…”