Self-driven solutions and resilience adapted by people with drug-resistant tuberculosis and their caregivers in Bengaluru and Hyderabad, India: a qualitative study.

Background: One-fifth of people with drug-resistance tuberculosis (DR-TB) who were initiated on newer shorter treatment regimen (with injection) had unfavourable treatment outcomes in India as on 2020. Evidence on self-driven solutions and resilience adapted by people with DR-TB (PwDR-TB) towards their multi-dimensional disease and treatment challenges are scarce globally, which we aimed to understand. Methods: In this qualitative study using positive deviance framework, we conducted semi-structured in-depth interviews among consenting adult PwDR-TB (7 women, 13 men) who completed shorter treatment regimen (including injections) with maximum treatment adherence. The study was conducted in the southern districts of Bengaluru and Hyderabad, India between June 2020 and December 2022. Caregivers (14 women, 6 men) and health providers (8 men, 2 women) of PwDR-TB were also interviewed. Interviews were conducted in local language (Kannada, Tamil, Telugu, Urdu and Hindi) and inquired about practices, behaviours, experiences, perceptions and attributes which enabled maximum adherence and resilience of PwDR-TB. Interviews were audio recorded, transcribed, and translated to English and coded for thematic analysis using inductive approach. Findings: Distinctive themes explanatory of the self-driven solutions and resilience exhibited by PwDR-TB and their caregivers were identified: (i) Self-adaptation towards the biological consequences of drugs, by personalised nutritional and adjuvant practices, which helped to improve drug ingestion and therapeutic effects. Also home remedies and self-plans for ameliorating injection pain. (ii) Perceptual adaptation towards drugs aversion and fatigue, by their mind diversion practices, routinisation and normalisation of drug intake process. and constant reinforcement and re-interpretation of bodily signs of disease recovery (iii) Family caregivers intense and participatory care for PwDR-TB, by aiding their essential life activities and ensuring survival, learning and fulfilling special nutritional needs and goal oriented actions to aid drug intake (iv) Health care providers care, marked by swift and timely risk mitigation of side-effects and crisis response (v) Acquired self-efficacy of PwDR-TB, by their decisive family concerns resulting in attitudinal change. Also being sensitised on the detrimental consequences of disease and being motivated through positive examples. Interpretation: Synthesised findings on self-driven solutions and resilience towards the multi-dimensional DR-TB challenges provides opportunity for developing and testing new interventions for its effectiveness in DR-TB care settings globally. Designing and testing personalised cognitive interventions for PwDR-TB: to inculcate attitudinal change and self-efficacy towards medication, developing cognitive reinforcements to address the perception burden of treatment, skill building and mainstreaming the role of family caregivers as therapeutic partners of PwDR-TB, curating self-adaptive behaviours and practices of PwDR-TB to normalise their drug consumptions experiences could be the way forward in building resilience towards DR-TB. Funding: United States Agency for International Development (USAID) through Karnataka Health Promotion Trust (KHPT), Bengaluru, India.

A mixed methods evaluation of a differentiated care model piloted for TB care in south India.

Background: India's National TB Elimination Program emphasizes patient-centered care to improve TB treatment outcomes. We describe the lessons learned from the implementation of a differentiated care model for TB care among individuals diagnosed with active TB. Design and methods: Used mixed methods to pilot the Differentiated Care Model. Community health workers (CHWs) conducted a risk and needs assessment among individuals who were recently began TB treatment. Individuals identified with specific factors that are associated with poor treatment adherence were provided education, counseling, and linked to treatment and support services. Examined changes in TB treatment outcomes between the two cohorts of individuals on TB treatment before and after the intervention. We used qualitative research methods to explore the experiences of patients, family members, and front-line TB workers with the implementation of the DCM pilot. Results: The CHWs were adept at the identification of individuals with risks to non-adherence. However, only a few provided differentiated care, as envisioned. There was no significant change in the TB treatment outcomes between the two cohorts of patients examined. CHWs' ability to provide differentiated care on a scale was limited by the short duration of implementation, their inadequate skills to manage co-morbidities, and the suboptimal support at the field level. Conclusions: It is feasible for a cadre of well-trained front-line workers, mentored and supported by counselors and doctors, to provide differentiated care to those at risk for unfavorable TB treatment outcomes. However, differentiated care must be implemented on a scale for a duration that allows a change from the conventional practice of front-line workers, in order to influence the outcomes of population-level TB treatment.

Tuberculosis treatment outcomes and patient support groups, southern India.

Objective: To assess treatment outcomes in tuberculosis patients participating in support group meetings in five districts of Karnataka and Telangana states in southern India. Methods: Tuberculosis patients from five selected districts who began treatment in 2019 were offered regular monthly support group meetings, with a focus on patients in urban slum areas with risk factors for adverse outcomes. We tracked the patients' participation in these meetings and extracted treatment outcomes from the Nikshay national tuberculosis database for the same patients in 2021. We compared treatment outcomes based on attendance of the support groups meetings. Findings: Of 30 706 tuberculosis patients who started treatment in 2019, 3651 (11.9%) attended support groups meetings. Of patients who attended at least one support meeting, 94.1% (3426/3639) had successful treatment outcomes versus 88.2% (23 745/26 922) of patients who did not attend meetings (adjusted odds ratio, aOR: 2.44; 95% confidence interval, CI: 2.10-2.82). The odds of successful treatment outcomes were higher in meeting participants than non-participants for all variables examined including: age ≥ 60 years (aOR: 3.19; 95% CI: 2.26-4.51); female sex (aOR: 3.33; 95% CI: 2.46-4.50); diabetes comorbidity (aOR: 3.03; 95% CI: 1.91-4.81); human immunodeficiency virus infection (aOR: 3.73; 95% CI: 1.76-7.93); tuberculosis retreatment (aOR: 1.69; 1.22-2.33); and drug-resistant tuberculosis (aOR: 1.93; 95% CI: 1.21-3.09). Conclusion: Participation in support groups for tuberculosis patients was significantly associated with successful tuberculosis treatment outcomes, especially among high-risk groups. Expanding access to support groups could improve tuberculosis treatment outcomes at the population level.

A Dual Perspective of Psycho-Social Barriers and Challenges Experienced by Drug-Resistant TB Patients and Their Caregivers through the Course of Diagnosis and Treatment: Findings from a Qualitative Study in Bengaluru and Hyderabad Districts of South India.

Qualitative insights regarding psycho-social barriers and challenges experienced by drug-resistant tuberculosis (DR-TB) patients and their caregivers are understudied in India. We conducted a qualitative study using semi-structured qualitative interviews among treatment-completed DR-TB patients (n = 20) and caregivers (n = 20) in Bengaluru and Hyderabad districts, which represented two different socio-cultural settings in South India. Criterion sampling was used for recruiting the eligible participants who completed treatment with adherence. "Emotional issues and social barriers" were identified to represent a major challenge for patients and caregivers, which occurred acutely after disease diagnosis, characterized by fear and emotional distress due to their perceived loss of life prospects, severity of symptoms, discomfort, and disease denial. Medication intolerance, chronic symptoms, lack of visible signs of treatment progress, loss of weight, and physical concerns caused subsequent fear and distress during the treatment phases for patients along with experiences of stigma. External triggers generated "decisive moments" of hopelessness and life-ending thoughts for patients at the diagnosis and early treatment phase. Medication related challenges included the perceived burden and power of pills which caused emotional distress for patients and intolerance towards caregivers. Pill burden was found as consequential as the side effects of injections. Challenges related to lack of support were another major theme, in which caregivers lacked resources for treatment support and nutrition. Throughout treatment, caregivers and patients expressed concern about a lack of supportive care from family members, sympathy, and intangible social support. Challenges during hospital admission in terms of lack of privacy, quality of services, individual attention, and empathy from health care workers were reported by patients and caregivers. Despite better adherence, DR-TB patients and caregivers experienced considerable emotional and social consequences. Differentiating DR-TB patients and caregivers' issues at different stages of diagnosis and treatment could help improve patient-centered outcomes in India and other high-burden nations.

"DOST" Model to Link and Support Drug Resistant TB Patients From Private Sector: An Experience From Delhi, India.

Background: The National TB Elimination Programme (NTEP) has quite successfully involved private sector for referral of presumptive drug resistant TB (DR-TB) patients for molecular testing and referral for DR-TB management. There was a challenge as all the referred patients were not reaching to the facilities. A "DOST" intervention model was implemented to strengthen the patient care pathway. We conducted this study to describe the patient care cascade, the clinico-demographic characteristics of patients linked to the treatment and to estimate the mean turn-around time for drug resistant TB care services. Methods: It is a cross-sectional study conducted at New Delhi during the period July 2019-December 2020 under programmatic settings. Results: A total of 9,331 patients were subjected to CB-NAAT test and 382 (4%) were found to be resistant for rifampicin and 231 (76%) were initiated on treatment in the public sector under NTEP. Conclusion: The DOST intervention model developed to link the DR-TB patients from private sector to the public sector DR-TB centers is found to be efficient and effective.

Can Patient Navigators Help Potential TB Patients Navigate the Diagnostic and Treatment Pathways? An Implementation Research from India.

Navigating the Indian health system is a challenge for people with tuberculosis (TB) symptoms. The onus of organizing care is on the patient and their families alone. Factors like gender discrimination and opportunity costs further aggravate this. As a result, people may not complete the diagnostic and treatment pathway even though they experience poor health. Navigators can aid in the pathway's completion. We implemented two projects in India-a public sector intervention in Bihar, with a population of 1.02 million, and a private sector intervention in Andhra Pradesh (AP), with a population of 8.45 million. Accredited Social Health Activists (ASHAs) of the public health system in Bihar and local field officers in AP facilitated the patients' navigation through the health system. In Bihar, ASHAs accompanied community-identified presumptive TB patients to the nearest primary health center, assisted them through the diagnostic process, and supported the patients throughout the TB treatment. In AP, the field officers liaised with the private physicians, accompanied presumptive patients through the diagnosis, counseled and started treatment, and followed-up with the patients during the treatment. Both projects recorded case-based data for all of the patients, and used the yield and historical TB notifications to evaluate the intervention's effect. Between July 2017 and December 2018, Bihar confirmed 1650 patients, which represented an increase of 94% in public notifications compared to the baseline. About 97% of them started treatment. During the same period in AP, private notifications increased by 147% compared to the baseline, and all 5765 patients started treatment. Patient navigators support the patients in the diagnostic and treatment pathways, and improve their health system experience. This novel approach of involving navigators in TB projects can improve the completion of the care cascade and reduce the loss to follow-up at various stages.

Engaging Informal Private Health Care Providers for TB Case Detection: Experiences from RIPEND Project in India.

BACKGROUND: Informal (unqualified) health care providers are an important source of medical care for persons with presumptive TB (PPTB) in India. A project (titled RIPEND) was implemented to engage informal providers for the identification of PPTBs and TB patients in 4 districts of Telangana State, India, during October 2018-December 2019 project period. Engagement involved sensitizing the informal providers about TB, providing them financial incentives to identify PPTBs, and linking these PPTBs to diagnostic and treatment services provided by the Government of India's National TB Elimination Programme. OBJECTIVES: To describe (a) the characteristics of the informal providers, along with their self-reported practices on TB diagnosis, treatment, and challenges encountered by the RIPEND project staff in engaging them in the project and (b) the outputs and outcomes of this engagement. METHODS: We used a combination of one-on-one interviews with informal providers, group interviews with RIPEND project staff, and secondary analysis of data available within the project's recording and reporting systems. RESULTS: A total of 555 informal providers were actively engaged under the project. The majority (87%) had a nonmedicine-related graduate degree and had been providing medical care for more than 10 years. Most (95%) were aware that a cough for 2 weeks or more is a symptom of pulmonary TB and that such patients should be referred for sputum-smear microscopy at a government health facility. Challenges in engaging the informal providers included motivating them to participate in the study, suboptimal mobile usage for referral services, and delays in providing financial incentives to them for referring PPTBs. During the project period (October 2018-December 2019), 8342 PPTBs were identified of which 1003 TB patients were detected and linked to TB treatment services. CONCLUSION: This project showed that engaging informal providers is feasible and that a large number of PPTB and TB patients can be identified through this effort. The Government of India should consider engaging informal providers for the early diagnosis of TB to reduce the missing TB cases in the country.

Community health workers augment the cascade of TB detection to care in urban slums of two metro cities in India.

BACKGROUND: Tuberculosis Health Action Learning Initiative (THALI) funded by USAID is a person-centered initiative, supporting vulnerable urban populations to gain access to TB services. THALI trained and placed 112 Community health workers (CHWs) to detect and support individuals with TB symptoms or disease within urban slums in two cities, Hyderabad and Bengaluru, covering a population of about 3 million. METHODS: CHWs visited the slums once in a fortnight. They conducted TB awareness activities. They referred individuals with TB symptoms for sputum testing to nearest public sector laboratories. They visited those testing TB positive, once a fortnight in the intensive phase, and once a month thereafter. They supported TB patients and families with counselling, contact screening and social scheme linkages. They complemented the shortfall in urban TB government field staff numbers and their capacity to engage with TB patients. Data on CHWs' patient referral for TB diagnosis and treatment support activities was entered into a database and analyzed to examine CHWs' role in the cascade of TB care. We compared achievements of six monthly referral cohorts from September 2016 to February 2019. RESULTS: Overall, 31 617 (approximately 1%) of slum population were identified as TB symptomatic and referred for diagnosis. Among the referred persons, 23 976 (76%) underwent testing of which 3841 (16%) were TB positive. Overall, 3812 (99%) were initiated on treatment and 2760 (72%) agreed for regular follow up by the CHWs. Fifty-seven percent of 2952 referred were tested in the first cohort, against 86% of 8315 in the last cohort. The annualized case detection rate through CHW referrals in Bengaluru increased from 5.5 to 52.0 per 100 000 during the period, while in Hyderabad it was 35.4 initially and increased up to 118.9 per 100 000 persons. The treatment success rate was 87.1% among 193 in the first cohort vs 91.3% among 677 in the last cohort. CONCLUSIONS: CHWs in urban slums augment TB detection to care cascade. Their performance and TB treatment outcomes improve over time. It would be important to examine the cost per TB case detected and successfully treated.

Is a differentiated care model needed for patients with TB? A cohort analysis of risk factors contributing to unfavourable outcomes among TB patients in two states in South India.

BACKGROUND: TB is a preventable and treatable disease. Yet, successful treatment outcomes at desired levels are elusive in many national TB programs, including India. We aim to identify risk factors for unfavourable outcomes to TB treatment, in order to subsequently design a care model that would improve treatment outcomes among these at-risk patients. METHODS: We conducted a cohort analysis among TB patients who had been recently initiated on treatment. The study was part of the internal program evaluation of a USAID-THALI project, implemented in select towns/cities of Karnataka and Telangana, south India. Community Health Workers (CHWs) under the project, used a pre-designed tool to assess TB patients for potential risks of an unfavourable outcome. CHWs followed up this cohort of patients until treatment outcomes were declared. We extracted treatment outcomes from patient's follow-up data and from the Nikshay portal. The specific cohort of patients included in our study were those whose risk was assessed during July and September, 2018, subsequent to conceptualisation, tool finalisation and CHW training. We used bivariate and multivariate logistic regression to assess each of the individual and combined risks against unfavourable outcomes; death alone, or death, lost to follow up and treatment failure, combined as 'unfavourable outcome'. RESULTS: A significantly higher likelihood of death and experiencing unfavourable outcome was observed for individuals having more than one risk (AOR: 4.19; 95% CI: 2.47-7.11 for death; AOR 2.21; 95% CI: 1.56-3.12 for unfavourable outcome) or only one risk (AOR: 3.28; 95% CI: 2.11-5.10 for death; AOR 1.71; 95% CI: 1.29-2.26 for unfavourable outcome) as compared to TB patients with no identified risk. Male, a lower education status, an initial weight below the national median weight, co-existing HIV, previous history of treatment, drug-resistant TB, and regular alcohol use had significantly higher odds of death and unfavourable outcome, while age > 60 was only associated with higher odds of death. CONCLUSION: A rapid risk assessment at treatment initiation can identify factors that are associated with unfavourable outcomes. TB programs could intensify care and support to these patients, in order to optimise treatment outcomes among TB patients.