Such a long journey: What health seeking pathways of patients with drug resistant tuberculosis in Mumbai tell us

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Abstract

Introduction

The Indian Tuberculosis (TB) Programme currently faces the dual challenges of tackling increasing numbers of drug resistant (DR) TB cases and regulating practices of a pluralistic private sector catering to TB patients. A study of health seeking behaviour of DR-TB patients in such a situation, offers an opportunity to understand the problems patients face while interacting with health systems.

Methodology

Forty-six DR-TB patients drawn from 15 high TB burden wards in Mumbai were interviewed using an open ended interview tool. Interviews were audio recorded and transcribed. Pathway schematics developed from analysis of patient records, were linked to transcripts. Open coding was used to analyse these units and themes were derived after collating the codes.

Results and discussion

The paper presents themes interwoven with narratives in the discussions. These include awareness-action gap among patients, role of neighbourhood providers, responsiveness of health systems, the not-such a ‘merry go round’ that patients go/are made to go on while seeking care, costs of diagnostics and treatment, and how DR-TB is viewed as the ‘big TB’.

Conclusion

The recommendations are based on a preventative ethos which is sustainable, compared to interventions with top-down approaches, which get piloted, but fail to sustain impact when scaled up.

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Most cited references 35

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Delay in diagnosis of pulmonary tuberculosis in low-and middle-income settings: systematic review and meta-analysis

Fentabil Getnet, Meaza Demissie, Nega Assefa … (2017)

Background Assessment of delays in seeking care and diagnosis of tuberculosis is essential to evaluate effectiveness of tuberculosis control programs, and identify programmatic impediments. Thus, this review of studies aimed to examine the extent of patient, health system, and total delays in diagnosis of pulmonary tuberculosis in low- and middle- income countries. Methods It was done following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. Electronic databases were searched to retrieve studies published from 2007 to 2015 including Pubmed central, Springer link, Hinari and Google scholar. Searching terms were pulmonary tuberculosis, health care seeking, health care seeking behavior, patient delay, diagnostic delay, health system delay, provider delay, and doctor delay. Retrieved studies were systematically reviewed and summarized using Comprehensive Meta-analysis software. Results Forty studies involving 18,975 patients qualified for systematic review, and 14 of them qualified for meta-analysis. The median diagnostic delay ranged from 30 to 366.5 days [IQR = 44–77.8], with a 4–199 days [IQR = 15–50] and 2–128.5 days [IQR = 12–34] due to patient and health system delays, respectively. The meta-analysis showed 42% of pulmonary tuberculosis patients delayed seeking care by a month or more; uneducated patients [pooled OR = 1.5, 95%CI = 1.1–1.9] and those who sought initial care from informal providers [pooled OR = 3, 95%CI = 2.3–3.9] had higher odds of patient delay. Conclusion Delay in diagnosis is still a major challenge of tuberculosis control and prevention programs in low- and middle- income settings. Efforts to develop new strategies for better case-finding using the existing systems and improving patients’ care seeking behavior need to be intensified.

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Tuberculosis Management by Private Practitioners in Mumbai, India: Has Anything Changed in Two Decades?

Zarir Udwadia, Lancelot M. Pinto, Mukund Uplekar (2010)

Setting Mumbai, India. A study conducted in Mumbai two decades ago revealed the extent of inappropriate tuberculosis (TB) management practices of private practitioners. Over the years, India's national TB programme has made significant progress in TB control. Efforts to engage private practitioners have also been made with several successful documented public-private mix initiatives in place. Objective To study prescribing practices of private practitioners in the treatment of tuberculosis, two decades after a similar study conducted in the same geographical area revealed dismal results. Methods Survey questionnaire administered to practicing general practitioners attending a continuing medical education programme. Results The participating practitioners had never been approached or oriented by the local TB programme. Only 6 of the 106 respondents wrote a prescription with a correct drug regimen. 106 doctors prescribed 63 different drug regimens. There was tendency to over treat with more drugs for longer durations. Only 3 of the 106 respondents could write an appropriate prescription for treatment of multidrug-resistant TB. Conclusions With a vast majority of private practitioners unable to provide a correct prescription for treating TB and not approached by the national TB programme, little seems to have changed over the years. Strategies to control TB through public sector health services will have little impact if inappropriate management of TB patients in private clinics continues unabated. Large scale implementation of public-private mix approaches should be a top priority for the programme. Ignoring the private sector could worsen the epidemic of multidrug-resistant and extensively drug-resistant forms of TB.

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The number of privately treated tuberculosis cases in India: an estimation from drug sales data

Nimalan Arinaminpathy, Deepak Batra, Sunil Khaparde … (2016)

Summary Background Understanding the amount of tuberculosis managed by the private sector in India is crucial to understanding the true burden of the disease in the country, and thus globally. In the absence of quality surveillance data on privately treated patients, commercial drug sales data offer an empirical foundation for disease burden estimation. Methods We used a large, nationally representative commercial dataset on sales of 189 anti-tuberculosis products available in India to calculate the amount of anti-tuberculosis treatment in the private sector in 2013–14. We corrected estimates using validation studies that audited prescriptions against tuberculosis diagnosis, and estimated uncertainty using Monte Carlo simulation. To address implications for numbers of patients with tuberculosis, we explored varying assumptions for average duration of tuberculosis treatment and accuracy of private diagnosis. Findings There were 17·793 million patient-months (95% credible interval 16·709 million to 19·841 million) of anti-tuberculosis treatment in the private sector in 2014, twice as many as the public sector. If 40–60% of private-sector tuberculosis diagnoses are correct, and if private-sector tuberculosis treatment lasts on average 2–6 months, this implies that 1·19–5·34 million tuberculosis cases were treated in the private sector in 2014 alone. The midpoint of these ranges yields an estimate of 2·2 million cases, two to three times higher than currently assumed. Interpretation India's private sector is treating an enormous number of patients for tuberculosis, appreciably higher than has been previously recognised. Accordingly, there is a re-doubled need to address this burden and to strengthen surveillance. Tuberculosis burden estimates in India and worldwide require revision. Funding Bill & Melinda Gates Foundation.

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Author and article information

Contributors

Aruna Bhattacharya Chakravarty: Role: ConceptualizationRole: Formal analysisRole: MethodologyRole: SupervisionRole: ValidationRole: VisualizationRole: Writing – original draft

Sheela Rangan: Role: ConceptualizationRole: Formal analysisRole: MethodologyRole: ValidationRole: Writing – review & editing

Yatin Dholakia:

ORCID: http://orcid.org/0000-0001-8482-1305

Role: InvestigationRole: ValidationRole: Writing – review & editing

Sonu Rai: Role: Data curationRole: SupervisionRole: VisualizationRole: Writing – review & editing

Swaran Kamble: Role: Data curationRole: VisualizationRole: Writing – review & editing

Tejaswi Raste: Role: Data curationRole: VisualizationRole: Writing – review & editing

Sanchi Shah: Role: Data curationRole: Writing – review & editing

Shimoni Shah: Role: Data curationRole: Writing – review & editing

Nerges Mistry:

ORCID: http://orcid.org/0000-0003-3509-4994

Role: ConceptualizationRole: Funding acquisitionRole: Project administrationRole: Writing – review & editing

HASNAIN SEYED EHTESHAM: Role: Editor

Journal

Journal ID (nlm-ta): PLoS One

Journal ID (iso-abbrev): PLoS ONE

Journal ID (publisher-id): plos

Journal ID (pmc): plosone

Title: PLoS ONE

Publisher: Public Library of Science (San Francisco, CA USA )

ISSN (Electronic): 1932-6203

Publication date (Electronic): 17 January 2019

Publication date Collection: 2019

Volume: 14

Issue: 1

Electronic Location Identifier: e0209924

Affiliations

[001]The Foundation for Medical Research, Worli, Mumbai, India

Jamia Hamdard, INDIA

Author notes

Competing Interests: The authors have declared that no competing interests exist.

* E-mail: fmr@ 123456fmrindia.org

Author information

Yatin Dholakia http://orcid.org/0000-0001-8482-1305

Nerges Mistry http://orcid.org/0000-0003-3509-4994

Article

Publisher ID: PONE-D-18-22711

DOI: 10.1371/journal.pone.0209924

PMC ID: 6336307

PubMed ID: 30653523

SO-VID: babc4ee5-6f8a-45b5-ba0f-ead57ab2a617

License:

This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

History

Date received : 1 August 2018

Date accepted : 13 December 2018

Page count

Figures: 7, Tables: 1, Pages: 25

Funding

Funded by: Bill and Melinda Gates Foundation (US) Via Sambodhi

Award ID: OPP1091874

This research was funded by the Bill & Melinda Gates Foundation via Sambodhi (OPP1091874). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

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Data Availability Due to the confidential nature of the data, the underlying data can only be made available upon request. The non author contact person who will deal with data access requests is Dr. Kayzad Nilgiriwala, Secretary, Institutional Ethics Committee of the Foundation for Medical Research. Contact mail: fmr@ 123456fmrindia.org ; kayzadnilgiriwala@ 123456gmail.com .

Such a long journey: What health seeking pathways of patients with drug resistant tuberculosis in Mumbai tell us

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Most cited references 35

Delay in diagnosis of pulmonary tuberculosis in low-and middle-income settings: systematic review and meta-analysis

Tuberculosis Management by Private Practitioners in Mumbai, India: Has Anything Changed in Two Decades?

The number of privately treated tuberculosis cases in India: an estimation from drug sales data

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