Understanding psychosocial and economic barriers to develop innovative people-centered models of tuberculosis care in Nepal

Background

Tuberculosis (TB) is the predominant cause of death from a single infectious disease in low- and middle-income countries (LMICs), causing 1.3 million deaths in 2022. Poverty, undernutrition, and poor living conditions drive TB. The majority of TB disease occurs in people who are poor, with little or no savings and marginal income to defray costs. Nepal is an LMIC in South Asia with a high TB prevalence of 416 people per 100,000 population. TB is predominantly diagnosed using a passive case-finding strategy (PCF), where people who feel ill, visit the government health centers of their own volition, and health providers evaluate symptoms. Despite the routine TB diagnosis and treatment is free of charge, the economic burden relative to household income is high, and psychosocial consequences include depression and high levels of stigma towards people with TB and their households in Nepal. To overcome these barriers, Nepal’s National TB Program strategies, as well as global TB strategies such as the END TB strategy, acknowledge that ending TB requires a comprehensive set of proven interventions rather than just a single biomedical approach. This warrants the development of effective strategies to address complex factors contributing to the development of TB, improving access to healthcare and reducing the negative impact of having TB. To do so, there is a need for a context-specific comprehensive understanding of the determinants of TB, the psychosocial characteristics of people with TB, and the burden of impact due to having TB. In addition, geographical barriers to accessing health care are a significant challenge in Nepal. Exploring the potential of innovative technologies such as drones for improving healthcare delivery provides a promising avenue to overcome such barriers and enhance access to services in remote areas. However, the existing evidence on effective and innovative TB care models in Nepal is scarce.

Aim

The thesis aims to provide context-specific evidence of barriers and facilitators to access TB diagnosis and care in Nepal and increase knowledge of the psychosocial characteristics and consequences of TB in Nepal.

Methods

The data for the thesis was collected between July 2017 and December 2019 from five districts of Nepal (Chitwan, Makwanpur, Dhanusha, Mahottari, and Pyuthan). The thesis contains four studies (I-IV). Study I involved quantitative, prospective longitudinal cohort studies that interviewed 221 people with TB and 119 people without active TB disease (controls). The study used an adapted and validated WHO Patient Cost questionnaire with additional structured questions on TB stigma, depression, and quality of life. The study evaluated the psychosocial factors of TB among people with TB who were at 8-12 weeks (baseline) and 22-26 weeks (follow-up) of treatment and compared them with single interviews taken with controls. Study II also included the longitudinal cohort study design and the same questionnaire and used the data from 221 people with TB (111 ACF and 110 PCF) to characterize the psychosocial consequences of TB and evaluate the role of ACF in mitigating the impact. Studies III and IV were qualitative studies that used semi-structured focus group discussions (FGD) guides. Study III involved seven FGDs with 54 TB stakeholders to understand the barriers and facilitators of accessing and engaging with TB diagnosis and care. Study IV included five FGDs with 40 community stakeholders and healthcare providers in Pyuthan district which explored their perceptions on using cargo drones to support TB diagnosis.

Results

Study I: The determinants of TB were poverty and lack of education. People in the two lowest tertiles poorer (adjusted odds ratio (aOR):2.31; 95% confidence interval (CI) [1.2 – 4.45]), poorest (aOR:2.84; 95%CI [1.39-5.79]) and without education (aOR: 2.92; 95%CI [1.28-6.67]) were associated with being a person with TB. People with TB were more likely to have depression in comparison to the controls when measured at baseline (25/221, 11% versus 0/119, 0%; p<0.001) and follow-up (11/221, 5% versus 0/119, 0%; p=<0.001) of TB treatment. Their self-rated quality of life was notably lower at baseline when compared with the controls (69.3 vs 81.5; p<0.001). However, the rating increased at follow-up and there was no difference between the two groups (80.3 vs 81.5; p=0.42).

Study II: Among people who had TB, at baseline, one in three had mild or major depression (68/221, 31%). Compared to baseline (25/221, 11%), the proportion of people reporting major depression reduced at follow-up (11/221, 5%). There was no difference in stigma score, depression, and quality of life among people with TB identified by ACF or PCF.

Study III: National multisectoral stakeholders perceived broader impediments to accessing and adhering to TB care, which encompassed individual, community, and health system levels. Such barriers included a lack of TB knowledge, psychosocial problems such as stigma, anxiety and depression, poor nutrition, low social support, and geographical impediments. However, the stakeholders perceived that these barriers could be addressed through basic health and TB education, mutual support, enhanced allowance from the NTP, and decentralized, community-based diagnostic services.

Study IV: Stakeholders in Pyuthan expressed trust in drones, viewing them as an advantageous tool for transporting sputum samples, reducing distance and time barriers for TB care, and fostering community development opportunities. Nevertheless, perceived challenges in operating drones for TB included financial sustainability and the technical capacity of local people to independently operate drones in Nepal.

Conclusions

The findings in this thesis underscore the multifaceted challenges that people with TB in Nepal face during TB treatment. Poverty and lack of education were key determinants of TB. The results show that ACF has no role in mitigating stigma, depression, or improving quality of life. TB has profound effects on people because of stigma and depression during their treatment. These factors severely limit their ability to access and complete TB care pathways. This highlights the urgent need to integrate screening for depression into routine TB care. The studies also emphasize the need to enhance health and TB education, provide locally appropriate social protection interventions, and strengthen the health system by investing in the use of innovations such as drones to develop people-centered TB diagnosis and care in Nepal. Addressing the social, economic, and psychological dimensions of TB, alongside innovative healthcare solutions, will be key to achieving the goal of ending TB in Nepal.

List of scientific papers

I. Kritika Dixit, Bhola Rai, Noemia Teixeira de Siqueira-Filha, Raghu Dhital, Tara Prasad Aryal, Manoj Kumar Sah, Ram Narayan Pandit, Puskar Raj Paudel, Jens W. Levy, Job van Rest, Suman Chandra Gurung, Gokul Mishra, Knut Lönnroth, Stephen Bertel Squire, Laura Bonnett, Kristi Sidney Annerstedt, Maxine Caws, Tom Wingfield Poverty, food insecurity, stigma, depression and quality of life among people with and without tuberculosis in Nepal: a prospective cohort study with nested cross-sectional comparator arm. Infectious Diseases of Poverty. [Manuscript]

II. Kritika Dixit, Bhola Rai, Noemia Teixeira de Siqueira-Filha, Raghu Dhital, Tara Prasad Aryal, Manoj Kumar Sah, Ram Narayan Pandit,Puskar Raj Paudel, Jens W. Levy, Job van Rest, Suman Chandra Gurung, Gokul Mishra, Knut Lönnroth, Stephen Bertel Squire, Kristi Sidney Annerstedt, Laura Bonnett, Ahmad Fuady, Maxine Caws, Tom Wingfield. Stigma, depression, and quality of life among people with pulmonary tuberculosis diagnosed through active and passive case finding in Nepal: a prospective cohort study. BMC Global and Public Health. 2024; 2 (1). https://doi.org/10.1186/s44263-024-00049-2

III. Kritika Dixit, Olivia Biermann, Bhola Rai, Tara Prasad Aryal, Gokul Mishra, Noemia Teixeira de Siqueira-Filha, Puskar Raj Paudel, Ram Narayan Pandit, Manoj Kumar Sah, Govinda Majhi, Jens W. Levy, Job van Rest, Suman Chandra Gurung, Raghu Dhital, Knut Lönnroth, Stephen Bertel Squire, Maxine Caws, Kristi Sidney Annerstedt, Tom Wingfield. Barriers and facilitators to accessing tuberculosis care in Nepal: a qualitative study to inform the design of a socioeconomic support intervention. BMJ Open; 11(10):e049900. https://doi.org/10.1136/bmjopen-2021-049900

IV. Kritika Dixit, Bhola Rai, Govind Majhi, Rajan Paudel, Raghu Dhital, Shraddha Acharya, Ganga Ram Budhathoki, Puskar Raj Paudel, Suman Chandra Gurung, Bishal Subedi, Pravin Lamsal, Uttam Pudasaini, Peter Small, Patrick Meier, Kristi Sidney Annerstedt, Maxine Caws. Healthcare providers' and community stakeholders’ perception of using drones for tuberculosis diagnosis in Nepal: An exploratory qualitative study. BMC Rural Health Services. [Manuscript]