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  • Published: 10 September 2022

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

  • Juliet Addo 1 ,
  • Dave Pearce 2 ,
  • Marilyn Metcalf 3 ,
  • Courtney Lundquist 1 ,
  • Gillian Thomas 4 ,
  • David Barros-Aguirre 5 ,
  • Gavin C. K. W. Koh 6 &
  • Mike Strange 1  

BMC Public Health volume  22 , Article number:  1717 ( 2022 ) Cite this article

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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.

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.

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.

Peer Review reports

Tuberculosis (TB) is a communicable infectious disease affecting around one quarter of the world’s population [ 1 ]. The ‘BRICS’ countries of Brazil​, Russia, India, China, and South Africa account for 47% of the total number of TB cases annually [ 1 , 2 , 3 ].

Caused by the bacillus Mycobacterium tuberculosis , around 5–10% of those infected will develop active disease. In 2019, 10 million new active cases and 1.4 million deaths were reported [ 1 ]. In 2020, the coronavirus disease 2019 (COVID-19) pandemic severely impacted the reporting of new cases and impeded diagnosis and treatment [ 3 ]. Treatment for multidrug-resistant TB (MDR-TB) also declined by 15% (from 177,100 in 2019 to 150,359 in 2020), with only about a third of patients who needed this treatment obtaining access [ 3 ].

Ambitious targets to end the TB epidemic by 2035 were established in 2015 by the WHO’s End TB Strategy [ 4 ], aligned with the United Nations Sustainable Development Goals [ 5 ]. In 2018, a United Nations General Assembly High-Level Meeting on Tuberculosis resulted in a Political Declaration on Tuberculosis, committing to end TB globally by 2030 [ 6 ]. Achieving these goals requires more equitable deployment of existing measures, and the development of new tools for TB prevention, diagnosis and treatment [ 7 ]. Progress towards ending TB also demands that interventions are aligned to patients’ experiences and address the challenges that they face [ 8 , 9 ].

TB typically involves the lungs (pulmonary TB) and is acquired via inhalation of droplet nuclei in the air following exposure usually over several hours. Close contact and the infectiousness of the source patient are key risk factors for the infection of tuberculin-negative persons [ 10 ]. Current treatment of drug-susceptible TB requires combination therapy consisting of an intensive phase of 2 months of isoniazid, rifampin, pyrazinamide, and ethambutol, followed by a continuation phase of 4 months of isoniazid and rifampin [ 11 ]. Directly observed therapy (DOT) is recommended to ensure adherence to the complex regimen and to deter the emergence and spread of MDR-TB. Treatment is successful in around 85% of patients following 6 months’ therapy [ 1 ]. Also, individuals can become non-infectious within two weeks of treatment initiation, restraining disease transmission [ 1 ]. Thus, prompt initiation of therapy is important for both the patient and their close contacts. However, the management of TB is complicated by the increasing prevalence of MDR-TB, which requires prolonged and complex therapy, and is more likely to be associated with poor outcomes [ 12 ]. Even after successful treatment, patients may have ongoing lung disease and a decreased life expectancy [ 13 , 14 , 15 ].

The drugs used to treat tuberculosis are well understood clinically, and susceptibility testing will indicate which treatment regimen is appropriate [ 11 , 12 ]. However, treatment effectiveness depends on patient adherence to a demanding and lengthy treatment regimen with associated side effects. In this context, a patient-focused approach which considers the individual’s specific circumstances is needed to ensure sufficient adherence and good outcomes from therapy. Interest in this field has been building steadily and is most suited to a qualitative investigational approach which allows deep exploration of motivations, reactions, goals, aspirations, and circumstances. However, studies more often consider the challenges faced by healthcare workers caring for TB patients [ 16 ], or the implementation of new management tools [ 17 , 18 ].

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. It is, therefore, unclear to what extent the experiences of TB patients are shared across countries.

We report the findings of a qualitative evaluation of TB patients’ experiences across the five BRICS countries. The study aimed to identify commonalities across the different country contexts, by examining the perspectives of TB patients throughout their full disease journey, including the emotional, psychosocial and practical challenges that patients and their families face. A greater understanding of these factors could inform care more focused on patients’ needs, with the aim of improving outcomes and directing the development of new tools to end TB.

Study design

This qualitative market research study was designed collaboratively by GSK and Adelphi Research and conducted between July 2020 and February 2021 across the five BRICS countries (Brazil, Russia, India, China, and South Africa). The study was non-interventional and without clinical endpoints. The aim was to achieve a better understanding of the TB market across the BRICS countries by identifying common challenges faced by TB patients and their families in their daily lives throughout their treatment journey.

The study conformed to ethical principles laid down in the Declaration of Helsinki, all national data protection laws and industry guidelines. Participants’ data was protected by compliance with General Data Protection Regulation [ 22 ]. All participating patients and household members provided written voluntary informed consent, and parents provided written consent for children under the age of consent. Consent was also provided for anonymized publication of the findings. For consent forms see supplementary materials, Additional file 1.

To investigate the experiences, meanings, and perspectives of TB patients, qualitative methodology was employed to identify themes within and across countries from in-depth interviews and self-recorded videos, supported by a self-completed health questionnaire.

Participants with experiences relevant to the study objectives were actively recruited from BRICS countries because they account for more TB cases than any other country in their respective WHO regions, and because of the different additional challenges confronting these countries such as the burden of TB-HIV co-infection in South Africa, the diversity of private sector care in India, and the burden of MDR-TB in India, China and Russia [ 1 , 2 , 23 ]. Remote data collection both preserved the privacy of participants and ensured the safety of moderators given the infectious nature of TB and the timing of the study during the COVID-19 pandemic.

Recruitment

Participants were recruited through independent healthcare fieldwork agencies in the different countries via referral from healthcare professionals and social or community workers, as well as using market research databases, posters and adverts in TB clinics, patient groups, and word of mouth referrals. Participants had the opportunity to discuss the study with recruiters before completing a screening guide to confirm patient eligibility (Additional file 2). Recruited participants received an honorarium at fair market value for their participation.

Recruitment continued until TB patients from 40 households, that is 8 per country, plus 1–5 members of their households had been sampled. The minimum target sample size was 80 participants. Previous studies have indicated that for this type of qualitative research as few as 6 interviews per setting are required to identify major themes [ 24 , 25 ], with saturation occurring within 12 interviews [ 26 ].

Participants

Eligible participants had a confirmed diagnosis of TB and were receiving treatment or had completed treatment within the previous 12 months. Close family and other household members were included where appropriate for support and additional information, except for China where the social stigma prevented discussion with individuals other than the patient. Participants were recruited from a range of socio-economic backgrounds, assessed based on income, education levels, and living standard. At least three participants from each country were to be female. The study sought to include a range of specific patient types, for example, persons living with HIV (PLWH), those with diabetes, smokers, those with a history of excessive alcohol consumption, and those with MDR-TB/relapsed TB. At least two patients per country were to be living in households which included a child diagnosed with TB or receiving preventive treatment. No participant was excluded because of lack of access to technology as the necessary equipment was loaned to participants where needed.

Data collection

The interview moderators, fluent in the local languages, were taken through a training process in each setting, detailing study objectives, inclusion criteria, and study methodology, followed by subsequent monitoring of the process and active feedback to ensure quality control. Data quality was assured by consistent and thorough briefing of the field workers, including regular follow up to ensure study procedures were followed. The discussion guide and videoing instructions were carefully designed to contain clear respondent instructions at each question.

Patients first completed a 5-min health questionnaire based on their physical health over the previous four weeks. Interviews with TB patients and household members were conducted remotely by a trained moderator in the form of either a 60-min video-streamed interview or a 60-min telephone interview. The questionnaire and interview guides are provided in the supplementary materials (Additional file 3). Participants also completed a 45-min follow up video task to create four short videos on a mobile phone in their own time to capture their personal experience, such as their living environment, changes in their living arrangements as a result of TB, the biggest challenges since the diagnosis, perception of the changes in their life from others around them, and their hopes and expectations for the future.

The interviews were transcribed verbatim from the original languages, that is: Brazil, Portuguese; Russia, Russian; India, Hindi and English; China, Mandarin; South Africa, English, Sesotho, isiZulu, Tswana, or Afrikaans with switching between languages as necessary. Following translation into English, the information was analysed manually using a thematic and comparative analysis approach to identify key themes both within countries and across all participants’ responses [ 27 , 28 ]. Analysts had no access to patient medical records and all patient identifying information was anonymized.

Interviews were coded thematically by three analysts, aiming to reach consensus through regular team meetings where the emerging findings were discussed. Additionally, non-verbal communication (including visual evidence of living conditions) present in the videos from the streamed interviews and the video tasks were shared with the full team at regular intervals and discussed/analysed using the thematic framework developed from the transcripts. Triangulation across the different data sources was done using cross-checking to assess convergence, complementarity and divergence at the individual participant level, between patients and their families, and at the country level between informants from the same country. The analysis was therefore grouped initially by country and then analysed for cross-cutting themes across all respondents. Quality control was achieved by continuous review by two senior analysts, one of whom was not involved in the initial analysis, plus a final check through all the analyses.

The sample consisted of 40 TB patients (8 from each country) plus 52 household members. Each patient was assigned an identifier to illustrate their country and number. Of the TB patients, 23 were men and 17 women, ranging between 13 and 60 years old. Fourteen were receiving first-line treatment, 10 second-line treatment, 2 patients had received multiple treatment lines, 11 had completed treatment, and 3 patients (all from Russia) were on a treatment break (Table 1 , Fig.  1 ). Risk factors for TB were reported in 23/40 patients, with some patients having multiple risk factors (Table 1 , Fig.  1 ). Most patients were of medium socio-economic status for their country (26/40), and no patients with high socio-economic status were recruited (Table 1 ). Except for India and South Africa, it was not possible to recruit at least two households with a child diagnosed with TB or receiving preventive treatment (Table 1 ).

figure 1

Summary of patient characteristics. Note that patients may have had more than one risk factor/co-morbidity

Patient health status

The self-reported health questionnaire indicated that most respondents (25/40) found that the physical impact of TB limited their activity. A higher proportion of patients who were currently receiving treatment (69.6% [16/23]) reported a physical impact of TB compared with those that had completed treatment (57.1% [8/14]) or who were on a treatment break (33.3% [1/3]). Most patients whose physical activity was impacted by TB reported that this affected them all or most of the time (88.0% [22/25]) (Fig.  2 A). Most patients (38/40) reported that their daily living was impacted in at least two ways (Fig.  2 B). Seven patients, five of whom were receiving treatment and two who had completed first-line treatment, stated that they were impacted by all six areas assessed (Fig.  2 B). Looking at specific impacts, the most reported were that TB stopped patients doing things that they liked to do (35/40), and economic hardship (28/40) (Fig.  2 C). Overall, it was clear that TB had significantly impaired the health status of patients and had a negative impact on daily living.

figure 2

Results of a self-reported health questionnaire. A The effect of TB on limiting daily activity due to patients’ physical health; B ) the impact of TB on daily living; and C ) the number of impacts on daily living experienced by patients

Patient journey

Pre-diagnosis.

The most common initial symptoms reported by patients were a long-lasting cough increasing in severity over time, fever, weight loss, and tiredness. Some patients experienced more severe symptoms such as haemoptysis, and pleural effusion. However, symptoms were often non-specific, and unless they were aware of a source of infection or had known risk factors (e.g. HIV), most patients did not consider TB as a potential cause. Notably, patients in South Africa were more likely to suspect TB because of a higher awareness in the community and the link with HIV. In India, recent typhoid infection was suspected as the cause of symptoms in some cases.

Patients tended to hope that the symptoms would resolve on their own using over-the-counter products and traditional medicine. Patients with addiction to alcohol did not always perceive the severity of their symptoms and were less willing to engage with healthcare providers. However, avoidance of healthcare providers was common across all settings, because of concerns for the associated costs.

“The symptoms were there for the last 2 ½ months but I did not know. He was coughing a lot, so I asked him to go to the doctor. He did not listen to me. He feared talking to the doctor.” Relative of TB patient, India (IN19). “One day, I started to have fever in the afternoon. After work, I went to receive infusion in a small local clinic. I remember my body temperature was 39.5 to 39.6 degrees Celsius. The doctor said my condition was very serious, so he prescribed 5 bottles of infusion to me, and I received all of them. But my fever persisted after such a lengthy infusion.” China (CN09).

The pathway for TB cases depended on symptom severity at presentation but navigating the healthcare system was tortuous for some patients. Patients first sought help using a familiar and accessible route (Fig.  3 ).

figure 3

The TB patient pathway. *There were no deaths during the study

Across all countries, the TB diagnosis came as a shock to most patients – their initial thought was ‘Will I die?’. PLWH were less surprised as they were aware of the association with TB. Some patients in South Africa believed they had been vaccinated against TB as children and were therefore protected. Many patients questioned how they had caught TB and worried about the negative misconceptions associated with the disease, particularly in Russia and Brazil. Patients feared that they would be ostracized and shunned by their families and communities. Young people with TB feared for their future, for example their careers, education, and prospects of marriage. Further concerns expressed by patients included the potential disruption to their life, job security and providing for their dependents, especially in India. Overall, there was uncertainty among patients as to whether they could cope; some expressed the fear of unintentional disclosure of their TB diagnosis to others. Notably, across all countries, families were often fearful of the potential costs, with a lack of clarity regarding which elements of treatment would be covered by insurance (where available) or were refundable from the public health system.

“[I thought] it is some kind of prison disease, which occurs more and more often in people who have served a sentence somewhere. That is, more disadvantaged groups of the population. I always thought about it in this way until I met it myself.” Russia (RU10).

Following diagnosis, healthcare providers were quick to reassure patients that TB is treatable but that it will take time and that they must try not to infect others. In South Africa some patients reported being warned of drug resistance. However, beyond this, TB-focused education was limited, and patients often conducted their own research via the Internet and word of mouth, though patient-friendly resources were described as inadequate in some settings.

“[The nurse] said if you don’t take your meds, they send you to [a TB hospital] and then you will receive extreme treatment. They inject you with needles and stuff. That is if you don’t use this meds at home, they will send you there and stay for six months.” South Africa (SA05).

Treatment side effects, pill burden, lifestyle restrictions and the long-term commitment required were very challenging for patients (Fig.  4 ). Patients generally did not know the names of their medications, but described having to take many pills of different types several times a day. Patients reported intolerable side effects, including nausea and vomiting, and patients with MDR-TB faced painful daily injections. In Russia, and to a lesser extent in China, patients were admitted to hospital to increase adherence. In Russia, patients recounted being admitted to sanatoriums for the treatment of TB.

“I take many anti-TB pills every day, covering 4–5 classes, about 20 tablets in total. Sometimes, it’s difficult for me to take medication, as I was quite reluctant to take it initially, but I had no choice, but to take it as a treatment.” China (CN11).

figure 4

Factors identified by patients as affecting adherence to TB therapy

Monitoring and adherence

Across countries and socioeconomic bands, patients perceived minimal therapy monitoring by healthcare providers, with little evidence of DOT. It is possible that this was because of interruption to normal healthcare services because of the COVID-19 pandemic (see below). Most patients visited healthcare settings frequently to pick up their medications. Less frequently, their weight was measured during clinic visits, sputum tests were conducted, and some patients were informed when they were no longer infectious and could return to work/education. Family played a key role in monitoring during treatment, encouraging patients to continue with their treatment, sharing regular reminders, and helping to pick up medication from health centres. Motivation to comply was prompted by the desire to get back to normal family life and work, the fear of death, potential drug resistance, and hospitalization. Although patients would briefly lapse without serious consequences, they were usually encouraged to continue treatment by family and healthcare providers.

“Sometimes [redacted] forgets to take the medication, and I argue with him because if one of us forgets the treatment and the other one doesn’t then it won’t work, if we don’t take it together, it won’t work.” Brazil (BR04).

Once treatment was initiated, health improvements were quickly apparent to most patients, with resolution of fever and abatement in cough. Although this increased patients’ optimism and secured a return to some of their previous activities, it could also lead patients to believe that they had recovered, undermining adherence to therapy. Adherence was also jeopardized where there were high barriers to accessing treatment, a poor understanding of drug resistance, and when patients were alcohol dependent (Fig.  4 ). Patients who did adhere to treatment were often well supported by family and well informed of the consequences of non-adherence. Conversely, those who did not adhere to treatment were often unaware of the consequences.

“By December I was already feeling like I’m already cured, I nearly decided not to continue with the treatment.” South Africa (SA01). “Actually, they didn’t tell me about the details then. It was very important to emphasize it to me, but the physician didn’t do it. If he did, it would draw my attention and it won’t lead to drug resistance, as I often missed the dose I was supposed to take.” China (CN06). “I live in a little town which is quite far from the city. I can either go by bus which takes at least an hour and a half, or I can get to the nearest bullet train, but there aren’t many trains available and they are expensive.” China (CN08).

Completion of treatment

Eleven patients had completed treatment, 4 from South Africa, 4 from India, 2 from Brazil, and 1 from China. All had recovered, 10 following first-line treatment and 1 following second-line treatment (India). Some respondents said that their time in isolation was a time of reflection where their lives had been ‘put on pause’ making them ‘appreciate the little things in life’ they had really missed. A few patients said that their experience with TB has driven them to want to increase awareness, and remove stigma around the disease e.g., patients in Brazil and China set up informal support networks with fellow patients, particularly where patients met during hospital stays. Most patients expressed relief that they were cured, and that treatment was over, and were generally hopeful for their future.

"My TB is cured, and I want to start again with my studies. I was preparing for a railway job but I had to give that up because of TB. Now I will start my studies again and apply for a government job." India (IN04). "Thanks to this [TB] I got rid of bad habits, I do not drink alcohol now and smoke less… And I found a job, and I earn some money at the moment, during the first period my brother supported me fully, thanks to him, and my mother helped what she could.” Russia (RU05). "After these three months since I have recovered, this is what it has brought me, the willingness to fight, to battle, also to take even more care of my health, not just mine but also of people around me, and take this story, my testament, my lived experience with TB… So it’s a goal in my life, to spread information among all those who are close to me." Relative of TB patient (BR01).

Access to services

Before TB was diagnosed, in some cases patients consulted healthcare providers in the private sector, for example, the local family doctor, traditional medicine providers, or pharmacies. Following diagnosis, more affluent patients claimed on insurance or paid for private sector treatment due to poor perceptions of the public sector, and some sought support in the private sector for a ‘second opinion’ or for problems which they felt were not being addressed in the public sector. However, the majority of patients (36/40) obtained their TB care through the public sector; three patients used the private sector with one accessing both public and private sector healthcare. Treatment was provided for free through the national programs, with relatively good access in most settings, though travel distance and wait times were a barrier to access. There were reports of drug stock outs and out of pocket expenses for additional diagnostic tests or prescriptions, including having to pay for MDR-TB treatment in some settings (China). A minority of patients reported being turned away from the public sector for not having the correct paperwork or not being able to book an appointment. The public sector had a poor reputation for long queues and poor service and most patients aspired to be able to afford private treatment where services were described as being better.

“In public [sector healthcare] those nurses don’t care, I remember when I accompanied him, I was told I was not allowed to get inside, so he went in on his own. You go in pick up whatever you need and get out because those people don’t have time for anything.” Relative of TB patient, South Africa (SA01). “In the Government hospital, the doctors do not listen to us. They come when they wish and give medicines. As it is, the doctors do not listen to poor people. I had to buy some medicines from outside.” Relative of TB patient, India (IN17). “Obtaining the medication – because the drugs can only be obtained in the hospital, you can’t buy them in retail pharmacies. If I run out of my medication, I wouldn’t be able to buy it from the retail pharmacy, I would have to go the hospital, which is inconvenient.” China (CN08).

The use of sanatoriums in Russia was unique. Following diagnosis, patients were sent to a dedicated facility or a TB unit within a hospital where they remained for at least 3–4 months, though confinement could last for up to a year. They were only allowed to leave with permission, for example, at weekends or holidays. Although patients generally accepted that it was for the ‘greater good’ it was frightening at first because some other patients on the ward had very severe disease. However, some patients expressed surprise that other patients were ‘normal’, because they believed the disease to be often associated with homelessness and prisons.

“They told me I had a resistant form of TB and that the treatment is very, very long lasting. At first, they said I would have to be hospitalized three to four months and that then I would be able to go home but when I got to the hospital, the ‘girls’ told me that three to four months is optimistic… In short, eight months. Eight in the hospital and a year after the hospital. That was a shock.” Russia (RU12). “In my room there were all young women and all were so great. All of them were socially adapted: an accountant, a paediatrician student. So, let’s say it was good company.” Russia (RU01).

Thematic analysis

Five major themes were identified as common across all the countries studied (Fig.  5 ).

figure 5

Thematic areas identified as common across five countries describing the challenges faced by TB patients

Economic hardship

Loss of earnings has the greatest economic impact for TB patients. Most patients stopped work because they felt too unwell to continue or were embarrassed by the symptoms, such as the persistent cough and severe weight loss. Some patients also felt the need to stay away from work to limit transmission to others or were ‘asked to leave’ by their employers as they were not covered by contracts. Many had no entitlement to sick pay. In some cases, patients were concerned that their financial situation could get worse as their diagnosis may mean prospective employers may be reluctant to take them on.

“The main problem is money. There is no problem greater than financial problems.” India (IN01). “I had to keep away from work because there was a lot of dust involved.” Brazil (BR15). “I cannot officially get a job, and I cannot unofficially either. But, what? Am I going to work as a loader? I cannot. This has seriously affected my finances… And who would hire if information comes out that there was TB? You will not get a job. I received a disability [payment].” Russia (RU05).

Even in regions where TB treatment was publicly funded, associated costs such as tests, hospitalization, prescriptions, travel, special food/supplements to manage weight loss, and medications to manage adverse effects were often borne by patients. The financial impact of TB meant that most patients had to rely on family or sometimes charities for support or take out loans. Time off for appointments still impacted earnings even after patients had returned to work.

“I also buy medications at my own expense [for gastric side effects] i.e. for TB, everything is free of charge due to the medical insurance policy, everything is fine, but if there is something secondary or something else not related to the diagnosis, then that is at your own expense.” Russia (RU07). “We are not educated people. I just wanted my child to recover. We are poor people; we could not work during lockdown. We had to borrow money from many people and requested help from doctors too. I thought my child would recover, but he did not. We were very stressed out.” Relative of TB patient, India (IN21). “To avoid delaying treatment, the doctor told me to take these four drugs upon diagnosis, and urged me to buy them elsewhere, as they were unavailable in the hospital. My wife found they were unavailable in many pharmacies either. Finally, she found them in several pharmacies, from where we bought them in early stage.” China (CN09).

Stigma associated with TB

Across all countries stigma was associated with TB, though it manifested in different ways. In China, TB was often kept a secret, even from family, whereas in South Africa, there was greater openness. In Brazil, though patients were open with family, there was reluctance to acknowledge their diagnosis with their community as TB is associated with wider social issues such as poverty, incarceration and ‘immoral lifestyles’. In India, TB patients felt discriminated against for other reasons, such as poverty, as well as TB. Stigma in Russia was related to the personal circumstances of the patient.

Young patients faced bullying at school/college and being dropped by friendship groups. Adults were ostracized by friends and relatives afraid of contracting TB, and relationships with friends and family suffered, leading to loneliness and depression. Respondents described instances when they were not invited to family events even after they had completed treatment and were cured. In some cases, TB appeared to ‘run in families’ meaning the stigma was intergenerational. Importantly, a family with TB was often considered a ‘low status’ family and this was compounded by the financial difficulties that accompany TB.

“A lot of my friends kept away from me because of this, because that’s what people know, that it’s contagious, but they don’t understand that the person on the other side is suffering as well, and we don’t only suffer a little bit, at least myself, it’s a very painful process, very painful, very complicated.” Relative of TB patient, Brazil (BR01). “The community was no longer as close to us because we are staying with a person that has TB – people at the queue at shops would turn around and come back when we have left.” Relative of TB patient, South Africa (SA14). “When a person has TB he becomes very annoyed as he has to go through a lot of things, plus there also comes a phase were people start avoiding you, they feel that if we come in contact with this person even we might acquire it.” India (IN01). “A person who has TB is not somebody who is well-regarded.” Brazil (BR04).

HIV co-infection played a major role in the TB experience, particularly in South Africa. Awareness of TB was higher among PLWH given their greater risk and regular contact with healthcare services. Also, the path to diagnosis was shorter given their engagement with HIV services with rapid referral reflecting the associated co-infection risks. In many cases, the HIV and TB clinics were co-located improving patient access. However, PLWH were highly aware of the stigma that TB carries with fear around the community reaction during the early stages of their journey.

"Now I’m scared I’m HIV positive, I have TB and now there’s Corona [COVID-19], what’s going to happen when I have all three of them?" South Africa (SA18). “So people were really scared, I think they are now more afraid of TB than HIV. I told my neighbour that I was diagnosed with TB and luckily she doesn’t talk much but still I was aware of their behaviour when they came by to do my laundry they would wait outside to hand it over to them and when they are done they would leave it by the door." South Africa (SA10).

Disruption to family life

A diagnosis of TB affects everyone in the household and the wider family. Cleaning and disinfecting routines have to be established and maintained, and there was a general awareness that separate cutlery must be used, living spaces needed good ventilation, and clothes and bedding should be washed more frequently. Sleeping arrangements to isolate TB patients were particularly problematic in India and South Africa where large families live together, and parental co-sleeping with children was no longer possible where this was practiced. In some cases, children were looked after in the homes of extended family members, away from parents with TB. Married patients feared abandonment or divorce and respondents felt ‘lucky’ that their partners had stayed with them despite their TB status. The reduced family contact, demands of treatment and financial hardship often strained family relationships.

“Life at home isn’t the same because I had to begin separating my cutlery and a glass – my clothes had to be washed separately, we have to clean down the house and open the windows to let the air circulate.” Brazil (BR15). “I’m worried I may infect my parents. So I’ve had to reduce my interactions with them, the time spent with them, the number of occasions I’m with them. And as they get older, they become confused and they don’t understand why I stay away.” China (CN08). “Our house always used to be full at weekends, friends would come around to watch films, sometimes we would make lunch, get pizza and sit and watch films, and then suddenly the house was empty.” Relative of TB patient, Brazil (BR01).

Mixed effects of COVID-19

Some TB patients observed that the COVID-19 pandemic normalized the idea of infection prevention, with mask wearing becoming common. Also, TB patients were able to hide their diagnosis more easily with social distancing measures. There was also less fear that they could infect the wider community. However, access to healthcare and medication was compromised with restrictions to movement and hospitals not accepting admissions for other conditions. Patients were fearful of ‘catching’ COVID-19 given their impaired respiratory health and existing co-morbidities, such as HIV and diabetes. Some respondents who were coming to the end of their isolation and anticipating greater freedoms and a return to a more normal life then faced COVID-19 restrictions.

“During the pandemic I was unable to go to the hospital for my regular follow-ups and prescription renewal, and so because of that my condition worsened, and I eventually ended up infecting my family.” CN08.

Assuming that efficacious treatment is provided, TB is curable. However, outcomes are often sub-optimal. This study aimed to explore common themes in the experiences of TB patients and their families in the five BRICS countries from diagnosis to completion of treatment. Using consistent methodology, economic hardship, stigma, TB-HIV co-infection, disruption to family life, and the mixed effects of COVID-19 were identified as themes encompassing the challenges facing TB patients across the five BRICS countries (Fig.  5 ). These factors, therefore, appear to be independent of the country setting. Further research should investigate the degree to which these factors and are potentially mutable by targeting systemic changes in healthcare and social provision and providing attention to patients’ individual needs.

Economic hardship was reported across all countries. TB is associated with economic vulnerability but can also drive families into poverty through loss of income, the costs of transportation and food supplements, and associated medical expenses [ 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 ]. Programs providing social protection to TB patients have been linked to improved outcomes and the increased uptake of preventive therapy but must be easily accessible [ 29 , 37 , 38 ]. Improvement of TB services can also reduce the number of families facing financial hardship [ 39 ]. Even though most healthcare systems in our study provided TB drugs free of charge, to be effective, treatment should encompass the wider economic impacts that patients experience. Despite various approaches, patients from all of the countries surveyed found themselves struggling financially and a more holistic approach to patient support is needed.

Stigma attached to TB is culturally distinct, but stems from a lack of awareness of TB and the persistence of stereotypes [ 40 , 41 ]. For example, in Russia, an association with prisons and poverty has persisted, despite TB affecting all sectors of society [ 42 ]. Stigma was most acutely felt in China, and a recent study described psychological distress in nearly two-thirds of TB patients, associated with a high experienced stigma [ 43 ]. In our study, some patients did not even disclose their diagnosis to close family. In newly diagnosed Chinese TB patients, non-disclosure of their TB status magnified patient-perceived stigma and was associated with depression – a risk factor for non-adherence [ 44 , 45 ]. Social support and doctor–patient communication appeared key factors for reducing TB-related stigma in China [ 46 ]. Also, educational approaches to raise awareness of TB diagnosis and treatment among the public are needed, particularly focused on those with low educational levels and more rural communities [ 40 , 47 , 48 ].

The association between TB and HIV is well documented. However, the impact on patients is less well understood. In this study, PLWH were more aware of TB and were more likely to seek care early and be diagnosed quickly. This is in contrast to a study in Thailand where PLWH had low TB awareness and attributed their early symptoms to AIDS, resulting in delayed TB diagnosis [ 49 ]. This emphasizes the importance of raising TB awareness in PLWH. In South Africa, TB and HIV services are often co-located and integrated [ 50 ]. However, a detailed analysis in South Africa of the challenges faced by PLWH who had MDR-TB highlighted similar issues to those described here for all TB patients, such as fear, stigma, dissociation from family and social networks, poor provider support, drug adverse events, and financial insecurity [ 51 ]. Also, patients tended to prioritize adherence to anti-retroviral therapy versus TB therapy because it was less challenging in terms of pill burden and adverse effects [ 52 ]. Until less demanding treatment regimens are available, targeted support to address the challenges of adherence in patients co-infected with TB-HIV is necessary.

The respondents in this study described a severely disrupted home life following a TB diagnosis. Patients were isolated and often infirm, and the economic and care responsibilities for family members were considerable. Families also suffered socially, being isolated or shunned by friends and the wider family. In many cases, it was family members who ensured adherence to medication, and social and family support for patients has been previously shown as a key factor in therapy adherence [ 41 , 53 , 54 ]. Despite this, the impact of the TB diagnosis on the family and how family members can best be supported has been rarely investigated [ 47 ], and we identify this as an important area for further research.

The COVID-19 epidemic has disrupted healthcare access globally [ 55 ]. In our study, TB patients reported drug shortages and restrictions to services during the period. TB patients also expressed concern regarding the consequences of contracting COVID-19. Similarly, a recent study in Brazil reported that TB patients were fearful of attending medical appointments [ 56 ]. TB patients do appear to be at greater risk of death or poor outcome with COVID-19 [ 57 ], and should therefore socially isolate or ‘shield’ [ 58 ]. TB patients did feel less stigmatized as social distancing and infection control measures were deployed for COVID-19. However, the interruption of treatment, with the risk of therapy failure, selection of MDR-TB, and increased transmissibility is a major threat to TB patients and their close contacts [ 59 ].

This study has several limitations. Although participants were identified through a variety of channels and a range of socioeconomic groups were sampled, this was not a randomized sample and we acknowledge that both marginalized and privileged groups may not engage in this kind of research. Also, there were no data on whether susceptibility testing was conducted following the TB diagnosis, so the appropriateness of therapy could not be assessed. Neither did we examine the differences between patients’ experiences of drug-susceptible versus MDR-TB; patients were not consistently aware of the difference and most patients were receiving or had recently completed first-line therapy. The patient pathway was not integrated into the thematic analysis but analysed separately in terms of the systemic challenges that patients face. This was because the complexity of the pathway did not map onto the themes in a meaningful way. For example, patients experienced economic hardship, stigma, and disruption to family life at most stages in the patient pathway, whereas TB-HIV co-infection had an important effect on the speed of diagnosis. Thus, patient pathway was examined systematically and separately to the thematic analysis which focused on the emotional, socio-economic and practical impacts of TB on patients’ daily lives. The analysis methods sought to remain impartial with repeated reviews by multiple analysts to reach consensus. However, the analysts were all based in the UK and we recognize that the cultural subtleties of some of the patients’ experiences may not have been fully appreciated.

In our study, TB patients’ perceptions and needs were expressed in their own words, from within their home environment, in confidence, to interviewers who were not involved in their healthcare. Most had struggled to adjust to their diagnosis, had poor access to information, lacked support from healthcare workers, were under significant financial pressure, and were highly conscious of stigma and the burden TB placed on their families.

Our findings highlight that much work still needs to be done before the goal of ending TB can be achieved. Structural changes require simplification of the TB patient pathway, reliable access to services, and the alleviation of financial pressures. Health education for patients, their families, healthcare providers and the public to increase awareness of TB symptoms and diagnosis, to encourage adherence, and to reduce stigma around the disease is needed. Importantly, TB patients do better with strong family and social networks to sustain them, and a greater understanding of how these can be better supported at the level of the individual patient throughout the TB treatment journey requires further investigation.

Despite the different cultural, political, and healthcare settings across the BRICS countries, TB patients faced very similar challenges. This commonality would not necessarily have been expected. It suggests that these factors are not only a product of the healthcare provision in the countries or the social, economic, and cultural pressures that patients face, but reflect an overarching insufficiency in the treatment of TB. The efficient delivery of comprehensive individualized care and support would certainly mitigate the negative impacts of TB on patients. However, these issues will likely not be fully resolved until treatment options are available that rapidly cure TB and prevent onward transmission.

Availability of data and materials

All relevant data are included in this publication. Recorded interviews will not be made available in order to maintain patient confidentiality. However, anonymised transcripts are available on reasonable request to the authors for ten years following study completion. For data requests please contact the corresponding author at [email protected].

Abbreviations

Coronavirus disease of 2019 (severe acute respiratory syndrome coronavirus 2)

Human immunodeficiency virus

Multidrug-resistant tuberculosis

People living with HIV

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Acknowledgements

Naomi Richardson of Magenta Communications Ltd. in collaboration with Juliet Addo developed the first draft of this article from a research report, provided editorial and graphic services and was funded by GSK. Elizabeth Kehler, Francesca Trewartha and Thea Westwater Smith of Adelphi were co-authors of the original report and co-analysts. Carly Davies, Vera Gielen and Myriam Drysdale from GSK reviewed and provided comments on the screening and interview guides.

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J.A. made substantial contributions to the conception and design of the work, interpretation of the data and drafting of the manuscript. C.L., M.M., M.S., D.B-A., G.C.K.W.K. and D.P. made substantial contributions to the conception and design of the work and interpretation of the data and critically revised the manuscript for intellectual content. G.T. made significant contributions to the design of the work, the acquisition of data, analysis and interpretation of data for the work and critically revised the manuscript for intellectual content. All authors read and approved the final manuscript.

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The research was conducted in accordance with the Helsinki Declaration, and all national data protection laws. In compliance with European Union and UK legislation, General Data Protection Regulation guidelines were followed to ensure full patient data confidentiality [ 22 ]. Informed consent was obtained electronically from all individual participants included in the study or their parents/guardians if under the age of consent. Consent was also provided for anonymized consolidated publication of the findings. Participants’ rights and privacy were protected at all times throughout the study. Participants were granted the right to withdraw from the study at any time during the study conduct and to withhold information as they saw fit. All information/data that could identify respondents to third parties was kept strictly confidential; all respondents remained anonymous by using nicknames for the study.

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Addo, J., Pearce, D., Metcalf, M. et al. Living with tuberculosis: a qualitative study of patients’ experiences with disease and treatment. BMC Public Health 22 , 1717 (2022). https://doi.org/10.1186/s12889-022-14115-7

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literature review on tuberculosis pdf

A systemic review on tuberculosis

Affiliations.

  • 1 Department of Microbiology, Sri Devaraj Urs Medical College, Sri Devaraj Urs Academy of Higher Education and Research, Kolar, India.
  • 2 Department of Microbiology, S Nijalingappa Medical College, Bagalkot, India.
  • 3 SDM Narayanaya Heart Centre, Sri Dharmasthala Manjunatheshwara Medical College, Sri Dharmasthala Manjunatheshwara University, Dharwad, India. Electronic address: [email protected].
  • PMID: 32825856
  • DOI: 10.1016/j.ijtb.2020.02.005

Tuberculosis (TB), which is caused by bacteria of the Mycobacterium tuberculosis complex, is one of the oldest diseases known to affect humans and a major cause of death worldwide. Tuberculosis continues to be a huge peril disease against the human population and according to WHO, tuberculosis is a major killer of the human population after HIV/AIDS. Tuberculosis is highly prevalent among the low socioeconomic section of the population and marginalized sections of the community. In India, National strategic plan (2017-2025) has a national goal of elimination of tuberculosis by 2025. It requires increased awareness and understanding of Tuberculosis. In this review article history, taxonomy, epidemiology, histology, immunology, pathogenesis and clinical features of both pulmonary tuberculosis (PTB) and extra-pulmonary tuberculosis (EPTB) has been discussed. A great length of detailed information regarding diagnostic modalities has been explained along with diagnostic algorithm for PTB and EPTB. Treatment regimen for sensitive, drug resistant and extensive drug resistant tuberculosis has been summarized along with newer drugs recommended for multi drug resistant tuberculosis. This review article has been written after extensive literature study in view of better understanding and to increase awareness regarding tuberculosis, as a sincere effort that will help eliminate tuberculosis off the face of the earth in near future.

Keywords: Immunology; Tuberculosis diagnosis; Tuberculosis pathogenesis; Tuberculosis treatment.

Copyright © 2020 Tuberculosis Association of India. Published by Elsevier B.V. All rights reserved.

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Defining tuberculosis vulnerability based on an adapted social determinants of health framework: a narrative review

a Dalla Lana School of Public Health, University of Toronto, Toronto, Canada

b Global Implementation Science Lab, University of Toronto, Toronto, Canada

Stefan Litvinjenko

Olivia magwood.

c Bruyère Research Institute, Ottawa, Canada

d Interdisciplinary School of Health Sciences, Faculty of Health Sciences, University of Ottawa, Ottawa, Canada

Xiaolin Wei

Associated data.

The dataset used and/or analysed during the current study are available from the corresponding author on reasonable request.

The World Health Organization’s new End TB Strategy emphasises socioeconomic interventions to reduce access barriers to TB care and address the social determinants of TB. To facilitate developing interventions that align with this strategy, we examined how TB vulnerability and vulnerable populations were defined in literature, with the aim to propose a definition and operational criteria for TB vulnerable populations through social determinants of health and equity perspectives. We searched for documents providing explicit definition of TB vulnerability or list of TB vulnerable populations. Guided by the Commission on the Social Determinants of Health framework, we synthesised the definitions, compiled vulnerable populations, developed a conceptual framework of TB vulnerability, and derived definition and criteria for TB vulnerable populations. We defined TB vulnerable populations as those whose context leads to disadvantaged socioeconomic positions that expose them to systematically higher risks of TB, but having limited access to TB care, thus leading to TB infection or progression to TB disease. We propose that TB vulnerable populations can be determined in three dimensions: disadvantaged socioeconomic position, higher risks of TB infection or progression to disease, and poor access to TB care. Examining TB vulnerability facilitates identification and support of vulnerable populations.

Abbreviation

Introduction.

Tuberculosis (TB) has been long regarded as a social disease. Even before the discovery of the tubercle bacillus by Robert Koch in 1882, a correlation between TB incidence and poverty was observed, as the majority of people who developed or died from TB were among the working class and poor families (Paluzzi, 2004 ). In the 1950s, Dubos, a microbiologist by training, commented that TB ‘is a social disease … its understanding demands that the impact of social and economic factors on the individual be considered as much as the mechanisms by which tubercle bacilli cause damage to the human body’ (Dubos & Dubos, 1952 ). Subsequently, a large body of epidemiological evidence has quantified the association between TB incidence and socio-economic determinants (Hargreaves et al., 2011 ; Rocha et al., 2011 ; Uplekar et al., 2015 ; Wingfield et al., 2014 ). For example, poor ventilation, overcrowded living conditions, poverty and malnutrition all increase the risk of exposure to TB or progression to TB disease (Baker et al., 2008 ; Boccia et al., 2009 ; Hill et al., 2006 ) (Cegielski & McMurray, 2004 ; Jaganath & Mupere, 2012 ; Oxlade & Murray, 2012 ; Santos et al., 2007 ). Many additional studies have supported the notion that the TB burden follows a strong socio-economic gradient, both within and across countries, with the poor having the highest risk of developing TB (Holtgrave & Crosby, 2004 ; Lopez De Fede et al., 2008 ; Muniyandi et al., 2007 ).

To guide the global response to ending TB as a public health problem (Rocha et al., 2011 ; Uplekar et al., 2015 ; Wingfield et al., 2016 ), in 2015, the World Health Organization (WHO) published the End TB Strategy, in which achieving universal access to TB care, addressing weaknesses in health systems and the social determinants of TB are key features (Uplekar et al., 2015 ). The strategy explicitly includes reference to health and social sector policies to strengthen national responses to TB as a key pillar, highlighting the importance of implementing socioeconomic interventions to reduce access barriers to TB care, strengthen social protection, and address the social determinants of TB (Uplekar et al., 2015 ). However, terms such as high-risk populations, marginalised populations, and vulnerable populations are sometimes used interchangeably to indicate target groups for such interventions. Therefore, developing a uniform definition of vulnerability within the TB context is crucial in identifying the communities and populations that are at a higher risk of contracting TB, and differentiating it from related concepts. This is an essential step in addressing the root causes of differential TB exposure and guaranteeing that individuals with the greatest need can access top-notch TB healthcare.

Various definitions of vulnerability already exist. For example, vulnerability has been defined by ten Have as ‘the state of susceptibility to harm from exposure to stresses associated with environmental and social change and from the absence of capacity to adapt’ (ten Have, 2018 ), whereas Rogers et al., state that vulnerability arises from biological, social, political, environmental, and cultural sources (Rogers et al., 2012 ). Allotey et al., have proposed that vulnerability is caused by individuals’ inability to protect themselves from harm and that vulnerability experienced by groups is shaped by shared ethnic, cultural, and social similarities (Allotey et al., 2012 ). According to Wisner, vulnerability is created by socioeconomic and political processes that expose individuals to different levels of harms (Wisner et al., 2014 ). Despite some differences in these definitions, vulnerability is often examined through equity, human rights, and bioethics lenses, and is rooted in inequalities in power, knowledge, and resources within societies, potentially resulting in harms.

Our narrative review aimed to examine how TB vulnerability and vulnerable populations are defined and characterised in the literature. Based on this review, we proposed a definition and criteria for TB vulnerable populations. We also compiled a list of TB vulnerable populations identified from the literature and aligned their attributes to the Commission on the Social Determinants of Health (CSDH) framework to develop a conceptual framework of TB vulnerability (World Health Organization, 2010 ).

We employed the narrative review method following the steps outlined by Ferrari, instead of a scoping or systematic review, because it is useful and practical when tracking the development of scientific principles or concepts (Ferrari, 2015 ).

Literature search

We developed systematic search strategies with a medical librarian to identify documents published in English, French, or Chinese that included definitions or criteria of TB related vulnerability. We searched the following databases, for the period 1 January 2010–31 October 2021: Medline, EMBASE, and the Cochrane Database for Systematic Reviews. We used a combination of keywords and subject headings to combine concepts of TB, and vulnerability. Complete search strategies for each database are available in Appendix 1. In addition, relevant journals, policy briefs, and technical proceedings (e.g. WHO and Stop TB Partnership guidelines and documents) were hand-searched. Reference lists of documents meeting the eligibility criteria were inspected for additional relevant information.

The results of the literature search were imported into Covidence to facilitate selection of articles and documents to be included in the review using a two-phased approach. The inclusion and exclusion criteria are summarised in Table 1 . An explicit definition of TB vulnerability or criteria to define vulnerability and/or a list of TB vulnerable populations, rather than simply a mention, were required for inclusion. We included documents published since the year 2010. This cut-off was selected to be sensitive to contemporary understandings of vulnerability. We followed a two-phase selection process using Covidence software. In phase one, capacity across four independent reviewers permitted title and abstract screening of all identified citations against our eligibility criteria (no article received more than two votes). We ensured all members were applying the eligibility criteria consistently by reviewing the first 100 citations individually, with conflicts for citations receiving ‘maybe-yes’ and ‘maybe-no’ votes resolved through discussion with the lead author (SL) In phase two, all full texts were assessed by one reviewer (SL.) and a sample of citations were assessed by a second reviewer (SW).

Inclusion and exclusion criteria.

First, we synthesised the definitions of TB vulnerability in a narrative manner. We then compiled a list of vulnerable populations identified from the documents and aligned the attributes of these vulnerable populations to the social determinants of health that are indicated as constructs and sub-constructs in the CSDH framework (World Health Organization, 2010 ). Based on the synthesis of TB vulnerable populations identified from the literature, we developed a conceptual framework of TB vulnerability. We derived a definition of and operational criteria for determining TB vulnerable populations from the proposed conceptual framework accordingly.

The CSDH framework is underpinned by the ethical principles of health equity (World Health Organization, 2010 ). It posits that ‘social, economic, and political mechanisms give rise to a set of socioeconomic positions; these socioeconomic positions in turn shape specific determinants of health status reflective of people’s place within social hierarchies; based on their respective social status, individuals experience differences in exposure and vulnerability to health-compromising conditions’ (World Health Organization, 2010 ). The framework explains and illustrates how the broader structural determinants dictate the distribution of intermediary determinants of health, thus resulting in systematic differences in disease risks experienced across populations (World Health Organization, 2010 ).

The CDSH framework has five major constructs: context, socioeconomic positions, intermediary determinants, health system, health equity and outcomes. Context refers to a broad set of structural, cultural, and functional factors and mechanisms within a social system that create hierarchies and define individuals’ socioeconomic positions (World Health Organization, 2010 ). The context facilitates unequal distribution of power, resources, and opportunities. This process of creating inequality within societies is often portrayed as social stratification. Individuals’ positions in stratified societies can generally be referred to as their socioeconomic positions (World Health Organization, 2010 ). Common proxy indicators for socioeconomic position include income, education, occupation, and ethnicity (World Health Organization, 2010 ). These underlying structural determinants operate through a set of intermediary determinants of health, including material circumstances, psychosocial circumstances, behavioural and biological factors, which leads to differences in exposure to disease risks and accessibility to health systems, and ultimately shapes health outcomes (World Health Organization, 2010 ).

To align with the scope of this review, we adapted the CSDH framework to specifically focus on how socioeconomic position and intermediary determinants shape TB vulnerability in populations. This helped us understand the structural and intermediatory determinants that create inequalities and differential exposure to TB. With this approach, we identified TB vulnerable populations and developed equity-focused health policies and interventions.

Definitions of TB vulnerability identified from the literature

We reviewed the titles and abstracts of 10,648 unique records. We found four documents that provided explicit definitions of vulnerability specifically in the TB context. These definitions highlight the impact of the broader socioeconomic determinants on TB vulnerability and are primarily grounded in human rights and equity. The WHO consolidated guidelines on TB screening state that TB disproportionately affects individuals who are already disadvantaged due to disease, their socioeconomic situation, or legal status, among other disadvantages, and these individuals are regarded as being vulnerable to TB (World Health Organization, 2021 ). In 2016, the Global Fund to Fight AIDS, TB and Malaria (Global Fund) defined vulnerable populations as ‘people whose situations or contexts make them especially vulnerable, or who experience inequality, prejudice, marginalisation, and limits on their social, economic, cultural and other rights’ (Greenall et al., 2017 ). Go et al., defined vulnerable populations as those having limited access to healthcare or lacking the economic resources to support costs associated with TB treatment (Go et al., 2018 ). The European Centre for Disease Prevention and Control (ECDC) characterises vulnerable populations as ‘those whose socioeconomic conditions or lifestyle makes it difficult to recognise TB symptoms, access health services, self-administer treatment and attend regular healthcare appointments’ (European Centre for Disease Prevention Control, 2016 ). It further acknowledged an increased risk of TB in these groups arising from ‘multiple socio-behavioural determinants that act at different levels and commonly exacerbate one another’ (European Centre for Disease Prevention Control, 2016 ).

Proposed definition and criteria of TB vulnerable populations

We defined TB vulnerable populations as the following:

People whose context leads to disadvantaged socioeconomic positions that put them at systematically higher risk for TB, with limited access to appropriate or high quality TB care, thus with a higher likelihood of experiencing health inequalities, developing TB infection or progression to TB disease. While vulnerable populations may include persons who are overrepresented in measures of TB risk and/or burden, vulnerability fundamentally precedes risk, leading to an increased risk of exposure or progression to disease, or of poor outcomes, or all of these.

In line with this definition, we propose the following three dimensions as criteria for identifying vulnerable populations ( Figure 1 ):

  • Disadvantaged socioeconomic positions . Socio-economic position refers to individuals’ place within social hierarchies, and can be assessed by proxy indicators, such as income, occupation, ethnicity, gender or sexual orientation, and migration status. Disadvantaged socioeconomic positions can be reflected by lower income, having occupations with higher health risks but lower social standing, being in ethnic or sexual minorities, or from certain migrant groups.
  • Higher risks of TB infection or progression to TB disease are determined by a combination of intrinsic factors (such as the infectiousness of the index case) and external factors that increases exposure to TB or accentuates the progression from infection to disease (Narasimhan et al., 2013 ). TB risk factors can be identified in epidemiological studies which quantify the probability of TB infection in relation to TB exposure and the subsequent progression to TB disease.
  • Poor access to quality or appropriate TB care. Access refers to ‘the timely use of personal health services to achieve the best health outcomes’ (Millman, 1993 ), and can be assessed by five abilities – abilities to perceive, to seek, to reach, to pay, and to engage – which collectively represent individuals’ ability to interact with the health systems when seeking and receiving health services (Haldane et al., 2021 ). Ability to perceive indicates the participants’ knowledge and awareness of needing TB care. Ability to seek refers to knowledge of available healthcare options. Ability to reach refers to factors that may enable or deter individuals from physically reaching the care that they would like to access. Ability to pay refers to individuals’ capacity to pay for travel to health facilities and health services. Ability to engage indicates individuals’ interaction with healthcare providers and their access to health-related information (Haldane et al., 2021 ).

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Criteria for determining populations vulnerable to TB.

List of TB vulnerable populations identified in the literature

We found 12 documents providing list of TB vulnerable populations, including: miners, sex workers, indigenous (First Nations) peoples, men who have sex with men, transgender individuals, refugees and internally displaced people, asylum seekers, migrant workers, the homeless, people residing in urban slums or informal settlements, incarcerated populations, nomadic population, people with HIV, people who use drugs and people with alcohol use disorders. The list of TB vulnerable populations aligned to the constructs and sub-constructs of the adapted CSDH framework is shown in Table 2 .

List of tuberculosis vulnerable populations aligned to the construct and sub construct of the social determinants of health framework.

Socioeconomic position is a key construct in the CSDH, which can be determined by subconstructs, such as income, occupation, ethnicity, gender and sexual orientation, and migration status. Income is a direct indicator that measures material resources, which in turn influence material conditions that impact upon health. The WHO End TB Strategy, as well as other documents indicated that low-income is one of the sources contributing to vulnerability and a characteristic shared by many groups vulnerable to TB (Lönnroth et al., 2015 ; Nadjane Batista Lacerda et al., 2014 ; World Health Organization, 2001 ). Occupation not only determines individuals’ exposure to specific occupational risks, but also reflects individuals’ position in society related to their social standing, income, and education (Galobardes et al., 2006 ). In this review, groups defined as vulnerable populations based on their occupations included miners and sex workers (Heuvelings et al., 2018 ; Stop TB Partnership, 2017 ), as these occupations often have specific health risks but also are in disadvantaged socioeconomic positions that may be characterised by low income and education, marginalisation, and limited access to health care. Few documents grouped healthcare workers into key populations for TB control. However, in this review that examined vulnerability from a social determinants of health perspective, groups that are characterised by higher TB risks alone, such as healthcare workers, were considered high-risk groups from an epidemiological perspective, but not vulnerable populations. In the context of TB, indigenous (First Nations) populations were identified to be particularly vulnerable due to poverty, inadequate healthcare infrastructure, and cultural and social factors (Nadjane Batista Lacerda et al., 2014 ; The Global Fund, 2021 ). Indigenous populations often have lower socioeconomic status, which can lead to overcrowding, malnutrition, and limited access to healthcare, contributing to increased risks of TB infections. Additionally, stigma and discrimination against indigenous populations may prevent them from seeking medical care or following through with treatment. Gender and sexual orientation also often form the basis of discrimination, and sexual minorities often experience higher levels of stigma and stress (Meyer, 2003 ). These factors further enhance social disadvantages and, consequently, may increase the risks of negative health outcomes. In the reviewed documents, men who have sex with men (MSM) and transgender individuals were listed among TB vulnerable populations (Stop TB Partnership, 2017 ). Although migration is not a construct in the original CSDH framework, many recent studies argue that certain migrant groups are adversely affected by cultural and social isolation, which further complicates the effects of other socioeconomic positioning indicators (e.g. income, ethnicity, and education), ultimately impacting on health outcomes (Sardadvar, 2015 ). Our reviewed documents identified migrant workers, refugees, internally displaced persons (IDPs) and asylum seekers as vulnerable populations for TB (Dara et al., 2016 ; European Centre for Disease Prevention Control, 2016 ; Heuvelings et al., 2018 ; Lönnroth et al., 2015 ; Sulis et al., 2014 ; The Global Fund, 2021 ; World Health Organization, 2001 , 2021 ).

Intermediary determinants. The underlying inequities resulting from differences in socioeconomic positions operate through a set of intermediary determinants of health, which are linked to individual-level physical conditions, health-related behaviours and physiological factors that shape health outcomes. In the CSDH framework, the main categories of intermediary determinants are material circumstances, behavioural and biological factors. Material circumstances include consumption potential (e.g. having the means to access and purchase food, clothes, and other consumer goods), physical working conditions, and the environment. These circumstances provide both resources for health and risks for health (World Health Organization, 2010 ). In the review, we found material circumstances, specifically the physical environment and living conditions, as a main factor for TB vulnerability. The reviewed documents defined homeless people (European Centre for Disease Prevention Control, 2016 ; Gupta et al., 2018 ; Heuvelings et al., 2018 ; Lönnroth et al., 2015 ; Sulis et al., 2014 ), people residing in urban slums (Shewade et al., 2019 ), prisoners (European Centre for Disease Prevention Control, 2016 ; Gupta et al., 2018 ; Heuvelings et al., 2018 ; Lönnroth et al., 2015 ; Sulis et al., 2014 ; World Health Organization, 2001 , 2021 ), and nomadic populations (Shewade et al., 2019 ) to be vulnerable to TB. Behavioural factors can protect health (e.g. physical activity) or adversely affect health outcomes (e.g. smoking and drug use). Our reviewed documents identified individuals with harmful alcohol use (European Centre for Disease Prevention Control, 2016 ; Lönnroth et al., 2015 ; Sulis et al., 2014 ) and drug users as TB vulnerable populations (European Centre for Disease Prevention Control, 2016 ; Gupta et al., 2018 ; Heuvelings et al., 2018 ; Lönnroth et al., 2015 ; World Health Organization, 2001 ). Biological factors include genetic and epidemiological risk factors for the disease, which may also compound with social stigma and discrimination to prevent individuals from accessing appropriate TB care. We found that people living with HIV were included as TB vulnerable populations in the reviewed documents (Heuvelings et al., 2018 ; Lönnroth et al., 2015 ; Sulis et al., 2014 ; World Health Organization, 2001 ).

Proposed conceptual framework of TB vulnerability

Based on our synthesis of TB vulnerable populations through the adapted CSDH framework, we propose a conceptual framework of TB vulnerability in Figure 2 . We suggest that TB vulnerability stems from social stratification that places individuals and groups into different socioeconomic positions. Populations in disadvantaged socioeconomic positions, indicated by lower income, high-risk occupations with low social status, ethnic or sexual minority status, or belonging to certain migrant groups, are more likely to be exposed to health-compromising material conditions and behaviours that increase their risk of TB exposure, progression, and limited access to quality TB care ( Figure 2 ). These populations are also at higher risk of experiencing health inequalities and developing TB infection or disease.

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A conceptual framework of TB vulnerability based on adapted Commission on Social Determinants of Health (CSDH) framework.

In this review, we examined the existing definitions of TB vulnerability, provided a definition of TB vulnerability, and proposed that it can be determined by a composite of three dimensions: socioeconomic positions, risk of TB infection or disease, and access to appropriate TB care. We compiled a list of TB vulnerable populations identified in the literature, guided by the adapted CSDH framework. Based on this synthesis, we developed a conceptual framework of TB vulnerability that highlights that disadvantaged socioeconomic positions often lead to higher risks of TB exposure or of developing TB disease and poorer healthcare access among certain populations.

Similar to previous definitions of TB vulnerability that are grounded in health equity and provided by key global stakeholders working on TB (European Centre for Disease Prevention Control, 2016 ; Go et al., 2018 ; Greenall et al., 2017 ; World Health Organization, 2021 ), our proposed definition and conceptual framework of TB vulnerability reaffirms that the social determinants of health is an underlying contributor to TB vulnerability in populations, thus indicating the need to address these underlying social and economic factors that contribute to differential exposure to TB risks, affect access to TB care and also outcomes related to the disease. Our proposed definition and conceptual framework of TB vulnerability align with the principles highlighted in the End TB Strategy and strategic directions taken by key global stakeholders working on TB (Lönnroth et al., 2015 ). By adopting human rights and equity as principles for TB responses, the End TB Strategy calls for adaptation of services to the special needs of the most vulnerable groups and the development of multisectoral actions to address the structural determinants of health (Lönnroth et al., 2015 ). The Global Fund expanded the list of key and vulnerable populations in their 2017–2022 strategy, which states that strengthened efforts are needed to address the challenges posed by poor access to healthcare experienced by these populations (Greenall et al., 2017 ).

Identifying TB vulnerable populations is crucial for developing targeted interventions and policies that address their specific needs and underlying vulnerabilities, which can help mitigate the TB risks caused by socioeconomic inequalities (Lönnroth et al., 2015 ). To aid in this process, we have proposed operational criteria for identifying vulnerable populations based on our conceptual framework of TB vulnerability. Our criteria incorporate the dimension of ‘socioeconomic positions’ to reflect the equity perspective and broader structural considerations of TB vulnerability beyond epidemiological risk or burden alone. This differentiation from ‘high-risk groups’ or ‘key populations’ emphasises the need for a more nuanced approach. Moreover, we have also included ‘risk of TB infection or disease’ and ‘access to TB care’ dimensions, which acknowledge the contextual specificity of vulnerable populations and the local epidemiology of TB and healthcare systems (European Centre for Disease Prevention Control, 2016 ).

However, we acknowledge that TB vulnerability is complex and can be examined from different angles. It should be noted that our review and the development of the definition and conceptual framework of TB vulnerability were performed from a social determinants of health perspective and were based on the contemporary and common understanding of vulnerability in the available literature, with the underlying assumption that TB risk follows a socio-economic gradient (Holtgrave & Crosby, 2004 ; Lopez De Fede et al., 2008 ; Ten Have, 2014 ). Our proposed operational criteria for identifying populations vulnerable to TB are intended to be used by policymakers, program implementers, and researchers to select groups to be included in interventions or research studies that align with the principles of the End TB Strategy, and aim to address underlying inequalities contributing to increased TB exposures and risks, limit access to quality TB health services, and differential outcomes related to the disease. The proposed definition and criteria of TB vulnerable populations highlight the importance of considering the broader socioeconomic determinants of health that contribute to TB vulnerability. Therefore, policymakers and researchers in the field should bear in mind that vulnerability to TB is a complex and multifaceted concept that goes beyond individual risk factors. The principles of human rights and equity should be taken into account when developing and implementing policies, programs, and interventions to address TB vulnerability.

Strengths and limitations

Our study has the following strengths. First, we provided a comprehensive overview of the current understanding of TB vulnerability, and its findings could inform the development of strategies to reduce TB burden and health inequalities. Second, the proposed operational definition and criteria for identifying TB vulnerable populations, may be helpful for future researcher, program implementers, and policymakers to develop human rights and equity centred TB interventions and programs. Finally, we used the CSDH framework as the theoretical underpinning for developing the definition and conceptualising of TB vulnerability, which provides a comprehensive and evidence-based approach to understanding the social determinants of health and how they contribute to health inequalities in the TB context.

Since the aim of this review was to provide an overview of a broad concept, we performed a narrative review, instead of a systematic or scoping review, thus our study is susceptible to the intrinsic limitations of narrative reviews. First, although we were missing dedicated search terms accounting for age, our search strategy was developed to be as sensitive as possible, as it consists of search terms for commonly known factors contributing to higher TB risks and a wide range of TB high-risk populations literature. Interestingly, there was limited literature to support persons with mental illness as a vulnerable population for TB, and we did not find documents specifically listed adolescents and the elderly as TB vulnerable populations. Conversely, we retrieved results on ‘high-risk populations’ which ultimately did not meet our criteria for TB vulnerability, such as people with diabetes, pregnant women, and healthcare workers. As screening for both definitions of TB vulnerability and related populations was done based on the same literature in tandem, it was challenging to accurately account for, and delineate nearly 20 population candidates a priori. Second, because many included documents were reports or guidelines, we were unable to assess the data quality using quality appraisal tools that are often used for assessing peer-reviewed studies as part of reviews. Third, our synthesis of data was not conducted based on a systematic data extraction and synthesis protocol; instead, we performed a narrative synthesis of information relevant to the aim of the study from documents selected by reviewers. Fourth, we limit our searches to low and middle-income countries, because the majority of the global burden of tuberculosis occurs in these countries. Finally, our review did not include national TB strategic plans, in which country-specific TB vulnerable populations may be presented.

Our proposed definition and conceptual framework of TB vulnerability reaffirms that inequality in social determinants of health is an underlying contributor to TB vulnerability in populations. The proposed operational criteria for TB vulnerable populations are useful for developing interventions to address underlying social inequalities that contribute to increased TB exposure and risks, limit access to high quality TB health services, and differential outcomes related to the disease. Examining TB vulnerability from social determinants of health and equity perspectives aligns with the End TB strategy’s principles and strategic directions adopted by key global stakeholders working in TB, and gives us insights into how to improve TB care to achieve better health equity among the most vulnerable populations.

Supplementary Material

Acknowledgements.

We would like to acknowledge and thank Kerri Viney, Annemieke Brands, and Farai Mavhunga from the World Health Organization Global Tuberculosis Program (WHO GTB) for supporting and providing inputs to the development and revision of the manuscript. We are also grateful to Elizabeth Uleryk and Krittika Bali who supported the development and implementation of the review. SW and XW conceived and designed the study. SW and SL collected, analysed, and synthesised the data, with inputs and support from XW. SW drafted the manuscript. SL, OM, and XW critically reviewed and revised the manuscript. All authors approved the final version.

Funding Statement

This review was funded by the World Health Organization.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

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IMAGES

  1. (PDF) Tuberculosis: An Overview and Review of Literature

    literature review on tuberculosis pdf

  2. (PDF) Costs to Health Services and the Patient of Treating Tuberculosis

    literature review on tuberculosis pdf

  3. (PDF) Pulmonary Tuberculosis

    literature review on tuberculosis pdf

  4. (PDF) A rare complication of pulmonary tuberculosis: A case report

    literature review on tuberculosis pdf

  5. (PDF) Molecular Diagnosis of Drug-Resistant Tuberculosis; A Literature

    literature review on tuberculosis pdf

  6. (PDF) Tuberculosis

    literature review on tuberculosis pdf

VIDEO

  1. Pulmonary Tuberculosis

  2. Head to Toe: Case Studies of Extrapulmonary Tuberculosis

  3. Dr. Stacey Rizza describes the risk factors for tuberculosis

  4. NCLEX Review on Tuberculosis (Important to know for the NCLEX)

  5. Treatment of tuberculosis

  6. Tuberculosis (National geographic)

COMMENTS

  1. (PDF) Tuberculosis: An Overview and Review of Literature

    PDF | Tuberculosis Is a major bluster to humanity resist to progress in health-care systems and the widespread weapon of TB control programs. ... An Overview and Review of Literature. July 2021 ...

  2. Tuberculosis

    Tuberculosis (TB) is an ancient human disease caused by Mycobacterium tuberculosis which mainly affects the lungs, making pulmonary disease the most common presentation (K Zaman, 2010) [1]. However, TB is a multi-systemic disease with a protean presentation. The organ system most commonly affected includes the respiratory system, the gastrointestinal (GI) system, the lymphoreticular system ...

  3. PDF Literature Review of Tuberculosis (TB) Intervention Studies

    ABSTRACT: This literature review looks at recent research studies that investigate factors involved in successful tuberculosis (TB) interventions, in particular Directly Observed Therapy Short-Course (DOTS), DOTS +, and incentive programs associated with DOTS programs. The review is based on a bibliography complied by Christina Blumel and ...

  4. Review and Updates on the Diagnosis of Tuberculosis

    1. Introduction. Tuberculosis (TB) is a leading global public health problem, with high morbidity and mortality in humans. Until the COVID-19 pandemic, TB was still the leading cause of death from a single infectious agent, ranking above HIV/acquired immune deficiency syndrome [].The number of people newly diagnosed with TB fell from 7.1 million in 2019 to 5.8 million in 2020, and reduced ...

  5. PDF Tuberculosis: An Overview and Review of Literature

    Tuberculosis: An Overview and Review of Literature. Acta Scientific Pharmacology. Volume 2 Issue 8 August 2021. Tuberculosis: An Overview and Review of Literature. Surya Kant1, Veenita Mitta2, Anil Kumar Mavi3, Rachna Chaturvedi4, Pooja Singh1*. 1Department of Respiratory Medicine, KGMU, Lucknow, India.

  6. Prevention of Tuberculosis: A Review of Guidelines

    Nine evidence-based guidelines for the prevention of tuberculosis (TB) infection were identified and included in this report. Five guidelines include recommendations regarding the use of the Bacillus Calmette-Guérin (BCG) vaccine for the prevention of TB. Six guidelines include recommendations regarding risk reduction measures to reduce the ...

  7. PDF Review and Updates on the Diagnosis of Tuberculosis

    The aim of this review was to provide an updated overview of current efforts to optimize classical diagnostic methods, as well as new molecular and other methodologies, for accurate diagnosis of patients with Mtb infection. Keywords: tuberculosis; diagnosis; laboratory methods; innovative techniques. 1. Introduction.

  8. PDF WHO consolidated WHO consolidated guidelines on tuberculosis

    tuberculosis in HIV-positive individuals: an updated systematic review Web Annex 4.14 User perspectives on LF-LAM for the diagnosis of active tuberculosis: results from qualitative research Web Annex 4.15 Low complexity automated NAATs: Diagnostic accuracy for detection of resistance to isoniazid and second-line anti-TB agents. A systematic review

  9. Beyond latent and active tuberculosis: a scoping review of conceptual

    There is growing recognition that tuberculosis (TB) infection and disease exists as a spectrum of states beyond the current binary classification of latent and active TB. Our aim was to systematically map and synthesize published conceptual frameworks for TB states. We searched MEDLINE, Embase and EMcare for review articles from 1946 to September 2023. We included 40 articles that explicitly ...

  10. Living with tuberculosis: a qualitative study of patients' experiences

    Tuberculosis (TB) is a communicable infectious disease affecting around one quarter of the world's population [].The 'BRICS' countries of Brazil , Russia, India, China, and South Africa account for 47% of the total number of TB cases annually [1,2,3].Caused by the bacillus Mycobacterium tuberculosis, around 5-10% of those infected will develop active disease.

  11. Review of Recent Literature on Tuberculosis

    Original Article from The New England Journal of Medicine — Review of Recent Literature on Tuberculosis ... PDF View PDF. Media Figures Other. Tables. Share Share. CONTENT LINK. Copy Link.

  12. Recent advances in the treatment of tuberculosis

    Tuberculosis (TB) is a global health challenge and one of the leading causes of death worldwide. In the last decade, the TB treatment landscape has dramatically changed. ... A non-systematic literature review was conducted in PubMed and MEDLINE, focusing on the treatment of TB. ... View PDF View article View in Scopus Google Scholar [5] C.S ...

  13. A systemic review on tuberculosis

    Tuberculosis is highly prevalent among the low socioeconomic section of the population and marginalized sections of the community. In India, National strategic plan (2017-2025) has a national goal of elimination of tuberculosis by 2025. It requires increased awareness and understanding of Tuberculosis. In this review article history, taxonomy ...

  14. New developments in tuberculosis diagnosis and treatment

    Introduction. Tuberculosis (TB) is a major cause of morbidity and mortality worldwide. TB is caused by the bacillus Mycobacterium tuberculosis (Mtb), which is spread via airborne droplets. Approximately one in four people worldwide demonstrate an immunological response to Mtb infection, which can remain dormant or progress into active disease forms []. ...

  15. Review of advances in diagnosis and treatment of pulmonary tuberculosis

    New diagnostic tests, regimens and drugs have emerged. With a background of milestones in the management of tuberculosis, we review the advances made in the diagnosis and treatment of pulmonary tuberculosis. Since India accounts for 27% of word's burden of tuberculosis, the changes in RNTCP have been highlighted. 1.

  16. PDF Interventions pathways to reduce tuberculosis-related stigma: a

    appraisal in the literature of the few existing interventions aimed at reducing TB-stigma. e single related system-atic review on TB-Stigma by Sommerland et al. focused on the eectiveness of stigma-reduction interventions [17]. Measuring and reducing TB-Stigma is complex. It involves interrelated, heterogeneous system structures,

  17. Review of literature on disseminated tuberculosis with emphasis on the

    Introduction. Disseminated tuberculosis (TB) is defined as the presence of two or more noncontiguous sites resulting from hematogenous dissemination of Mycobacterium tuberculosis, occurring as a result of progressive primary infection, reactivation of a latent focus with subsequent spread,[] or rarely through iatrogenic origin.[] Nowadays, the term miliary TB also refers to progressive and ...

  18. PDF Technology And Its Role In Supporting Tuberculosis Treatment ...

    This article is a systematic literature review that focuses on the use of technology in improving treatment adherence in TB patients. The method used is Literature Review. The journals taken are international reputable journals with appropriate themes. The databases used in this literature search are Scopus, Web of Science, and Science Direct.

  19. Defining tuberculosis vulnerability based on an adapted social

    Introduction. Tuberculosis (TB) has been long regarded as a social disease. Even before the discovery of the tubercle bacillus by Robert Koch in 1882, a correlation between TB incidence and poverty was observed, as the majority of people who developed or died from TB were among the working class and poor families (Paluzzi, 2004).In the 1950s, Dubos, a microbiologist by training, commented that ...