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

Chakravarty, Aruna Bhattacharya; Rangan, Sheela; Dholakia, Yatin; Rai, S.N.; Kamble, Swaran; Raste, Tejaswi; Shah, Sanchi; Shah, Shimoni; Mistry, Nerges

doi:10.1371/journal.pone.0209924

Cited by 18 publications

(13 citation statements)

References 37 publications

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“…Previous studies have examined how patients manage their illness and the impact that TB has on their daily lives, their families, and the wider community [19,20], as well as the stigma associated with poverty and HIV and the effects of discrimination [21]. However, defining studies on the experiences of TB patients and their families are not available for all the BRICS countries, and comparison between studies with different methodologies and objectives is problematic.…”

Section: Introductionmentioning

confidence: 99%

Living with tuberculosis: a qualitative study of patients’ experiences with disease and treatment

et al. 2022

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Background Although tuberculosis (TB) is a curable disease, treatment is complex and prolonged, requiring considerable commitment from patients. This study aimed to understand the common perspectives of TB patients across Brazil, Russia, India, China, and South Africa throughout their disease journey, including the emotional, psychological, and practical challenges that patients and their families face. Methods This qualitative market research study was conducted between July 2020 and February 2021. Eight TB patients from each country (n = 40) completed health questionnaires, video/telephone interviews, and diaries regarding their experiences of TB. Additionally, 52 household members were interviewed. Patients at different stages of their TB treatment journey, from a range of socioeconomic groups, with or without TB risk factors were sought. Anonymized data underwent triangulation and thematic analysis by iterative coding of statements. Results The sample included 23 men and 17 women aged 13–60 years old, with risk factors for TB reported by 23/40 patients. Although patients were from different countries and cultural backgrounds, experiencing diverse health system contexts, five themes emerged as common across the sample. 1) Economic hardship from loss of income and medical/travel expenses. 2) Widespread stigma, delaying presentation and deeply affecting patients’ emotional wellbeing. 3) TB and HIV co-infection was particularly challenging, but increased TB awareness and accelerated diagnosis. 4) Disruption to family life strained relationships and increased patients’ feelings of isolation and loneliness. 5) The COVID-19 pandemic made it easier for TB patients to keep their condition private, but disrupted access to services. Conclusions Despite disparate cultural, socio-economic, and systemic contexts across countries, TB patients experience common challenges. A robust examination of the needs of individual patients and their families is required to improve the patient experience, encourage adherence, and promote cure, given the limitations of current treatment.

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Section: Introductionmentioning

confidence: 99%

Living with tuberculosis: a qualitative study of patients’ experiences with disease and treatment

et al. 2022

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“…Patients go and test at other facilities to see if the result is the same. This finding is corroborated by a recent study that looked at health seeking pathways of patients with drug resistant tuberculosis [36]. Courtwright and Turner found that some of the causes of TB stigma were: perceived transmission risk from infected people; poverty; and its association with HIV [37].…”

Section: Discussionmentioning

confidence: 56%

Initial loss to follow up of tuberculosis patients in South Africa: perspectives of program managers

Mwansa-Kambafwile¹,

Jewett²,

Chasela³

et al. 2020

BMC Public Health

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Background: Tuberculosis (TB) remains a serious public health problem in South Africa. Initial loss to follow up (LTFU) rates among TB patients are high, varying between 14.9 and 22.5%. From the perspective of patients, documented reasons for this include poor communication between patient and staff after testing, not being aware that results are ready and other competing priorities such as preference to go to work as opposed to seeking healthcare. Ward-based Outreach Teams (WBOTs) routinely conduct home visits to ensure adherence to medication for various conditions including TB. We explored reasons for TB initial loss to follow up from the perspectives of TB program managers and WBOT program managers, with a focus on the WBOT's (potential) role in reducing initial LTFU, in particular. Methods: Key informant interviews with five WBOT program managers and four TB program managers were conducted. The interviews were audio-recorded, then transcribed and exported to NVivo 11 software for coding. A hybrid analytic approach consisting of both inductive and deductive coding was used to identify themes. Results: The age of the nine managers ranged between 28 and 52 years old, of which two were male. They had been in their current position for between 2 to 12 years. Prior to treatment initiation, WBOTs screen household members for TB and refer them for TB testing if need be, but integration of the two programs is emphasized only after TB treatment has been initiated. Counseling of patients testing for TB is not guaranteed due to frequent staff rotations and staff shortages. Participants reported that possible dissatisfaction with services as well as stigma associated with the TB diagnosis could explain loss to follow up prior to treatment initiation. Conclusion: Program managers view health system related factors such as staff rotations, poor communication with patients and lack of counseling as contributing to the problem of initial LTFU among TB patients. The integration of the WBOT and TB programs is limited to referring suspected cases for testing and patients already on treatment.

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“…Others have to do with the experience of undergoing DR-TB treatment and include psychological distress, economic hardship, and the stigma and discrimination faced by people living with DR-TB, often at the hands of medical providers themselves. The experiential treatment journey of a person who is diagnosed with DR-TB is treacherous at best [32]. High rates of depression and anxiety have been reported among persons undergoing treatment for DR-TB, and while some of this may be due to circumstances faced prior to the DR-TB diagnosis, a substantial proportion of people report worsening of mental health during the first several months of treatment [33].…”

Section: Experiences and Perceptions Of Quality In Dr-tb Carementioning

confidence: 99%

Quality of drug-resistant tuberculosis care: Gaps and solutions

Udwadia

Furin

2019

Journal of Clinical Tuberculosis and Other Mycobacterial Diseas

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Drug-resistant forms of tuberculosis (DR-TB) are a significant cause of global morbidity and mortality and the treatment of DR-TB is characterized by long and toxic regimens that result in low rates of cure. There are few formal studies documenting the quality of DR-TB treatment services provided globally, but the limited data that do exist show there is a quality crisis in the field. This paper reviews current issues impacting quality of care in DR-TB, including within the areas of patient-centeredness, safety, effectiveness and equity. Specific issues affecting DR-TB quality of care include: 1) the use of regimens with limited efficacy, significant toxicity, and high pill burden; 2) standardized treatment without drug susceptibility testing; 3) non-quality assured medications and drug stock outs; 4) lack of access to newer and repurposed drugs; 5) high rates of adverse events coupled with minimal monitoring and management; 6) care provided by multiple providers in the private sector; 7) depression, anxiety, and stress; and 8) stigma and discrimination. The paper discusses potential ways to improve quality in each of these areas and concludes that many of these issues arise from the traditional “public health approach” to TB and will only transformed when a human-rights based approach is put into practice.

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

Cited by 18 publications

References 37 publications

Living with tuberculosis: a qualitative study of patients’ experiences with disease and treatment

Living with tuberculosis: a qualitative study of patients’ experiences with disease and treatment

Initial loss to follow up of tuberculosis patients in South Africa: perspectives of program managers

Quality of drug-resistant tuberculosis care: Gaps and solutions

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