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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.

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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 ).

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.

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 ).

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).

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 ).

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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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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The top twenty papers on tuberculosis

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Which papers have provided the most interesting recent advances in tuberculosis research? Which new discoveries in pathogenesis, epidemiology, drug discovery or vaccine development have been the most important or are likely to have the highest impact to the field?

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Rather than relying on citations, we posed these questions directly to the tuberculosis community and asked TB researchers to identify what they perceived as the most important papers over the past 3 years. We received feedback from around 50 experts. Their responses were astonishingly diverse, no doubt reflecting the diverse expertise of the scientists we polled. The hot list—papers suggested by at least three experts—along with some illuminating comments, is presented below. The numbers in blue show the percentage of respondents who picked that paper.

Topping the list is the identification of a new drug for tuberculosis that works by inhibiting a completely new target. Such new drugs are sorely needed, and nothing highlights this more strongly than the paper that appears at number two in the hot list. The Lancet report by Gerald Friedland and colleagues describes the extremely high mortality rates seen in HIV-infected patients infected with extensively drug-resistant TB (XDR-TB)—a strain resistant to almost all currently available drugs.

Perusing the other papers, five themes emerged as having seen important advances: secretion of virulence factors, new tools in genomics, new drugs, bacterial survival and metabolism. The papers from the top twenty that advanced these areas (shaded in yellow) are placed in context by experts in the field in the News and Views articles on pages 279–287 . The remaining papers from the list (shaded in blue) are discussed in brief on pages 288–289 . And to find out how much resemblance this top twenty bears to a list of high-impact papers generated by more traditional means (citations), turn to page 278 .

Andries, K. et al . A diarylquinoline drug active on the ATP synthase of Mycobacterium tuberculosis . Science 307 , 223–227 (2005).

“One of the most promising new anti-TB drugs currently in development.” Christopher Walsh , Harvard

Ghandi, N.R. et al . Extensively drug-resistant tuberculosis as a cause of death in patients co-infected with tuberculosis and HIV in a rural area of South Africa. Lancet 368 , 1575–1580 (2006).

“A jolt to reality. The XDR-TB patients all died and almost all died within 16 days of the sputum samples being collected. It gave a crisis perspective to a problem we all knew existed but were adopting an ostrich approach to.” Salim Abdool Karim , KwaZulu-Natal

Grode, L. et al . Increased vaccine efficacy against tuberculosis of recombinant Mycobacterium bovis bacille Calmette-Guerin mutants that secrete listeriolysin. J. Clin. Invest. 115 , 2472–2479 (2005).

“Previously the only type of TB vaccine more potent than BCG was BCG overexpressing a major TB antigen. This paper represents another type of altered BCG vaccine. Although it has not yet been reported to show superior efficacy in the more stringent guinea pig model, it is a promising new approach.” Marcus Horwitz , UCLA

Champion, P.A., Stanley, S.A., Champion, M.M., Brown, E.J. & Cox, J.S. C-terminal signal sequence promotes virulence factor secretion in Mycobacterium tuberculosis . Science 313 , 1632–1636 (2006).

Munoz-Elias, E.J. & McKinney, J.D. Mycobacterium tuberculosis isocitrate lyases 1 and 2 are jointly required for in vivo growth and virulence. Nat. Med. 11 , 638–644 (2005).

“The first indication of the signal that promotes virulence factor secretion.” Paul Van Helden , Stellenbosch

McShane, H. et al . Recombinant modified vaccinia virus Ankara expressing antigen 85A boosts BCG-primed and naturally acquired antimycobacterial immunity in humans. Nat. Med. 10 , 1240–1244 (2004).

“The first clinical trial showing that a novel subunit TB vaccine could boost IFN- g responses in BCG-vaccinated humans, paving the way for further clinical trials.” Philip Marsh , Health Protection Agency, UK

Cosma, C.L., Humbert, O. & Ramakrishnan, L. Superinfecting mycobacteria home to established tuberculous granulomas. Nat. Immunol. 5 , 828–835 (2004).

Matsumoto, M. et al . OPC-67683, a nitro-dihydro-imidazooxazole derivative with promising action against tuberculosis in vitro and in mice. PLoS Med. 3 , e466 (2006).

Reed, M.B et al . A glycolipid of hypervirulent tuberculosis strains that inhibits the innate immune response. Nature 431 , 84–87 (2004).

“An important addition to the TB drug pipeline. We need several candidates such as this one to develop a totally new regimen that shortens the current treatment duration to 2–3 months.” Koen Andries , Johnson & Johnson

Boshoff, H.I. et al . The transcriptional responses of Mycobacterium tuberculosis to inhibitors of metabolism: novel insights into drug mechanisms of action. J. Biol. Chem. 279 , 40174–40184 (2004).

Burman, W.J. et al . Moxifloxacin versus ethambutol in the first 2 months of treatment for pulmonary tuberculosis. Am. J. Respir. Crit. Care Med. 174 , 331–338 (2006).

“Moxifloxacin is the furthest along new drug for TB. Among other things this paper highlights the need for greatly increased clinical trials capacity for TB.” Neil Schluger , Columbia

Flores-Villanueva, P.O. et al A functional promoter polymorphism in monocyte chemoattractant protein-1 is associated with increased susceptibility to pulmonary tuberculosis. J. Exp. Med. 202 , 1649–1658 (2005).

“The first study to identify in ethnically diverse human populations a common genetic variation that predisposes those infected with Mycobacterium tuberculosis to develop clinically evident disease.” Carl Nathan , Cornell

Gutierrez, M.C. et al . Ancient origin and gene mosaicism of the progenitor of Mycobacterium tuberculosis . PLoS Pathog. 1 , e5 (2005).

Makinoshima, H. & Glickman, M.S. Regulation of Mycobacterium tuberculosis cell envelope composition and virulence by intramembrane proteolysis. Nature 436 , 406–409 (2005).

Manjunatha et al . Identification of a nitroimidazo-oxazine-specific protein involved in PA-824 resistance in Mycobacterium tuberculosis . Proc. Natl. Acad. Sci. USA. 103 , 431–436 (2006).

Rengarajan, J., Bloom, B.R. & Rubin, E.J. Genome-wide requirements for Mycobacterium tuberculosis adaptation and survival in macrophages. Proc. Natl. Acad. Sci. USA 102 , 8327–8332 (2005).

Sassetti, C.M., Boyd, D.H. & Rubin, E.J. Genes required for mycobacterial growth defined by high density mutagenesis. Mol Microbiol. 48 , 77–84 (2007).

Stanley, S.A., Raghavan, S., Hwang, W.W. & Cox, J.S. Acute infection and macrophage subversion by Mycobacterium tuberculosis require a specialized secretion system. Proc. Natl. Acad. Sci. USA 100 , 13001–13006 (2003).

Voskuil, M.I. et al . Inhibition of respiration by nitric oxide induces a Mycobacterium tuberculosis dormancy program. J. Exp. Med. 198 , 705–713 (2003).

“Another promising clinical candidate. The authors investigate mutants that are resistant to PA-824, teasing apart both the molecular basis of resistance and the mechanism of its intracellular activation, both of which will provide clues to help guide structure–activity relationships in this drug class.” Michael Fischbach , Harvard

“The greatest challenge in treating tuberculosis is that organisms persist for extended periods of time despite antibiotic therapy. This paper describes some of the physiologic responses that underlie one of the possible mechanisms of persistence—adaptation to low-oxygen environment.” Eric Rubin , Harvard

Walburger, A. et al . Protein kinase G from pathogenic mycobacteria promotes survival within macrophages. Science 304 , 1800–1804 (2004).

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• v.20; 2020 Aug

A questionnaire of knowledge, attitude and practices on tuberculosis among medical interns in Nepal

Anna berg-johnsen.

a Department of Public Health and Nursing, Faculty of Medicine and Health Sciences, Norwegian University of Science and Technology, NO 7489 Trondheim, Norway

Synne Osaland Hådem

Dipesh tamrakar.

c Department of Community Program, Dhulikhel Hospital, Kathmandu University Hospital, Dhulikhel, Kavre, Nepal

Ingunn Harstad

b Department of Pulmonary Medicine, St Olavs University Hospital, PO Box 3250 Sluppen, N-7006 Trondheim, Norway

Tuberculosis (TB) remains a major health problem worldwide, including in Nepal where around 33,000 new cases of TB were diagnosed in 2018 and 5400 patients died. There are challenges in the diagnostic process, treatment, and follow-up. Deaths, increased transmission and development of multi- drug resistant TB could be the consequences. Young doctors play an important role in this struggle, and therefore, their knowledge of and attitudes towards TB are crucial.

We surveyed medical interns in Nepal regarding their knowledge, attitude and practices on TB and their adherence to the National Tuberculosis Programmes’ guidelines. The objective was to determine the associations between TB knowledge, and attitude and the factors that influence them.

A WHO cross-sectional questionnaire template was modified and piloted. It was distributed anonymously among medical interns at three private medical colleges. Statistical analyses were performed to establish possible associations between TB knowledge and attitude, and the investigated variables, and to investigate differences between the medical colleges.

Of 270 interns, 185 (69%) interns were included. The mean knowledge score was 13,3 (SD: 2,12) of a maximum of 19. The possible attitude scores ranged from zero to 14 points, whereas the mean attitudes score was 9,4 (SD: 1,89). Some unacceptable attitudes and knowledge gaps were identified, including disease detection and management. There was an association between the knowledge score and attitude score and between the number of TB patients seen and knowledge/attitude.

The surveyed interns had an adequate level of TB related knowledge, and acceptable attitudes. However, some unacceptable knowledge gaps and attitudes were detected. This survey underlines the considerable need of closing these knowledge gaps, and improving the attitudes, for which it is important for medical students to practice at a TB clinic and see a certain number of TB patients.

1. Introduction

Tuberculosis (TB) is still a major global health problem as the global incidence in 2018 was estimated to be 10.0 millions, and the mortality 1.2 millions [1] . The World Health Organization (WHO) and the United Nations’ Millennium Development Goals (MDG) [3] together with the Stop TB Strategy [4] have developed strategies for eliminating TB, which have led to a decline in absolute number of TB-deaths and TB incidence rate since year 2000.

Nepal is one of the member states that have committed to these strategies and have made progress regarding TB throughout the last decades. The National Tuberculosis Programme, (NTP) has been the responsible agency, and, in 1996, the directly-observed treatment short-course (DOTS) strategy, a 5-component strategy for TB management and control, was initiated in Nepal. Subsequently, the Stop TB Strategy, The WHO‘s strategy to curb TB by 2015, and the END TB Strategy were both adopted [5] .

In 2018, 33.474.000 new cases were notified in Nepal, and an estimated 5.400 died from TB the same year [1] , [6] . However, that figure likely underestimated the actual number of 8.000–10.000 cases, that were either not detected or not reported [6] . About 2.2% of new TB cases and 15.4% of retreatment cases have Multi Drug Resistant (MDR)-TB, with around 400 such cases reported each year. However, the real numbers could be higher as drug susceptibility testing is done only in a minority of TB cases. Health service delivery in Nepal is provided by both the private and public sectors. The NTP has faced challenges in providing free TB care and integrating the TB Control Programme into the private sector [7] .

As TB is a leading cause of disability adjusted life years (DALYs), acknowledging, managing and investing in the disease will result in substantial economic and health returns [8] . WHO emphasizes that “the medical school should provide every graduate with the knowledge, skills and attitudes essential to the management of tuberculosis in the patient and in the community as a whole” [9] . Studies from several countries have assessed the knowledge, attitude and/or practices on TB among medical students and young doctors. Several of those studies indicate a lack of knowledge about TB among interns and inadequate management of the disease by them [10] , [11] , [12] , [13] , [14] . However, a study comparing students from Canada, India, and Uganda found that TB-related knowledge and practices were adequate [15] . The results were related to the number of TB patients seen and curriculum hours on TB. Another study from Italy also found a relationship between knowledge and the number of TB patients seen as well as a strong link between knowledge and memory of a previously taken Mantoux test [16] .In this study, the knowledge was described as moderate. There have been no similar studies from Nepal.

The present study aimed to investigate interns knowledge, attitude and practices (KAP) on TB, as well as their adherence to the NTP guidelines. The purpose was to identify the associations between their knowledge and attitude and factors that influence them. This information can help make pre-and postgraduate medical teaching and training better suited to the needs of the population and the TB control programme. This is necessary to meet the future requirements for well-educated medical doctors with a good attitude towards TB patients.

This quantitative cross-sectional study was conducted via a self-administered, anonymous questionnaire. The questionnaire was a modified version of the WHO’s Knowledge Attitude Practice (KAP)-template assessing sociodemographic data and knowledge, attitude and practices on tuberculosis [17] . The questionnaire was piloted among 10 randomly selected young doctors in Nepal before the study could be conducted.

2.1. Study site and study population

Nepal has 19 medical colleges, and Kathmandu University (KU), a private university, has nine affiliated medical colleges. The Norwegian University of Science and Technology (NTNU) has a collaboration with the School of Medical Sciences (KUSMS) Dhulikhel at KU [18] . All KU-affiliated medical colleges were invited by a contact person at KUSMS to participate in the survey. Three colleges accepted the invitation: Nepal Medical College (NMC) in Kathmandu, Dhulikhel (KUSMS), and Bharatpur College of Medical Sciences (CMS) outside of the Kathmandu valley. The participants were medical interns who had completed their bachelor of medicine, bachelor of surgery (MBBS) degree . Participants were over 21 years old, and included both men and women.

Data collection took place in Nepal from 3 September 2017 to 17 October 2017. The interns who were available at their college at the time of the study; one day at CMS, and several days at KUSMS and NMC, answered a self-administered questionnaire on paper, which was handed out by a third party responsible for the interns at the respective colleges. The answers from the questionnaire were not scanned, but manually entered into SPSS Statistics Version 24 with every answer given a code during the entry. Data validity was ensured through double entry and crosschecking of data and random checks before analysis.

2.2. Analysis

SPSS Statistics Version 24 and Version 25 were used for the analyses.

Some of the questions allowed multiple responses (“check all that apply”), while other questions requiring only one answer. Some of the interns gave more than one answer to questions only requiring one answer. Those replies were excluded from the analysis.

The knowledge score was calculated based on 18 questions regarding TB knowledge. Correct answers were determined based on the annual report from the NTP in Nepal [6] . All questions with only one correct answer were each given 1point and questions allowing more than one answer were given 1–2 points. The maximum possible knowledge score was 19.

The attitude score to measure good or poor attitude towards TB was calculated based on attitude related questions. The maximum possible attitude score was 14 points. The answers indication a good attitude were given 2 points, while the answers showing poor attitude got zero points. Neutral and missing answers got 1 point. Question 32 regarding attitude allowed multiple responses. The choices were “fear”, “surprise”, “shame”, “sadness/hopelessness”, and “I don’t know”, with each choice getting 1 point. Thus, maximum score on this question was 4, while the other questions regarding attitude had a maximum score of 2 each.

To analyse the factors associated with the TB knowledge score and factors associated with the attitude score, regression analysis with one-way ANOVA was performed. To check correlation between knowledge and attitude two-tailed T-test using Pearson Correlation was used. Significance was considered at a p-value < 0.05.

2.3. Ethical considerations

The interns were given an information sheet and gave informed consent by participating in the study. The data was collected anonymously, and only unidentifiable sociodemographic data was collected.

A verbal request to the Regional Committees for Medical and Health Research Ethics Norway clarified that ethical approval in Norway was not needed as no patient information was gathered in the study.

In Nepal ethical approval was received from the KUSMS Institutional Review Committee (KUSMS/IRC) (84/17), and from the Research Director at NMC (IRC-NMC), while CMS accepted the KUSMS/IRC.

3.1. Study population and characteristics

Three medical schools with a total of 270 interns accepted the invitation, with 185 (69%) interns, including 81 females (44%), participating in the study ( Table1 ). The age of the participants ranged between 21 and 30 years, and 126 (68%) were below 25 years of age.

Demographic characteristics of study population by medical colleges, gender and age.

KUSMS: Kathmandu University School of Medical Sciences, CMS: College of Medical Sciences, NMC: Nepal Medical College.

One out of five interns had taken a tuberculin skin test (TST) less than five years ago ( Table 2 ), 131 (71%) had seen more than 10 TB patients, and 56 (30%) had friends or family members with TB ( Table 2 ).

Mean knowledge and attitude scores.

SD: standard deviation, KUSMS: Kathmandu University School of Medical Sciences, CMS: College of Medical Sciences, NMC: Nepal Medical College.

3.2. TB knowledge

The survey found that 131 (71%) and 167 (89%) of the responders were unaware of the incidence of TB cases in Nepal and of TB related mortality ( Fig. 1 ). Less than half of the interns mentioned guidelines or the NTP as the main source of information but almost all of them knew about the strategy for and costs of treatment. However, only one fourth of the interns knew all main symptoms of TB, and half of them knew the four most important symptoms. Also, half of them knew which test to do first and nearly half of them knew how to monitor TB. However, 178 (96%) knew about the referral process and knowledge about treatment was good. Only half of the interns knew that TB patients are non-infectious after two weeks of treatment ( Fig. 1 ).

Percentage of correct answers on 18 knowledge-related questions regarding TB.

The mean knowledge score for all participants was 13.3 (SD: 2.12) of a maximum of 19. The mean knowledge score for the three medical colleges was as follows: KUSMS 12.9 (SD: 2.1) CMS 13.4 (SD: 2.0), and NMC 13.6 (SD: 2.2). There were no significant differences between the colleges. ( Table 2 , Table 3 ). However, there was a positive association between being female, having “seen more than 10 patients”, and having taken a TST within the last five years, and the knowledge score ( Table 3 ). The interns who considered themselves not at risk for TB, or who would tell no one or just one person if they contracted TB, had a lower knowledge score.

Correlates of TB knowledge, using one-way ANOVA.

TST: Tuberculin skin test, CI: Confidence interval, KUSMS: Kathmandu University School of Medical Sciences, CMS: College of Medical Sciences, NMC: Nepal Medical College.

3.3. TB attitude

Among the interns, 144 (77%) said they could imagine themselves working with TB patients in the future and 179 (97%) wanted to learn more about TB ( Fig. 2 ). Altogether 144 (78%) interns considered themselves to be at risk of contracting the disease. If a friend of them developed TB, 171 (92%) of them would visit him/her. When asked about how they would react if they developed TB themselves, 99 (54%) of the interns said they would react with fear, 41 (22%) with surprise, 25 (14%) would feel sadness/hopelessness and 7 (4%) embarrassment ( Fig. 2 ). More than 1/3 would only tell the diagnosis to a doctor/medical worker, and to nobody else.

Distribution of answers on attitude questions.

The mean attitude score was 9.4 (SD:1.89) and CMS and NMC had a higher score than KUSMS ( Table 2 , Table 4 ). Being 25 years or older were found to have a positive association with the attitude score ( Table 4 ). There was a positive correlation between greater knowledge and better attitude (0.3) p < 0,001 when tested using two tailed Pearson correlation test.

Correlates of TB attitude, using one-way ANOVA.

Test for normality and visual inspection of normal Q-q plots showed that the knowledge score was normally distributed. When adjusted for the knowledge score, the attitude score was also normally distributed in the same tests.

4. Discussion

4.1. important findings.

The WHO recommendations that medical school should “provide every graduate with the knowledge, skills and attitudes essential to the management of tuberculosis in the patient and in the community as a whole” [9] was only partly investigated in this study as the skills were not tested and not all details in the recommendations were checked. A large proportion of the interns were considered to have adequate knowledge overall regarding TB and the NTP, and there was no significant difference in the knowledge scores between the medical colleges included in the study. However, one should not ignore the identified knowledge gaps regarding at risk groups, symptoms and examination, and the current TB epidemiology in Nepal or the fact that 37% of the interns felt unable to speak freely of TB. There was a correlation between knowledge and attitude score. The median attitude score was considered adequate in general and 77% of the interns said they could imagine themselves working with TB in the future, while almost all of them acknowledged that TB was a major health problem in Nepal.

4.2. Knowledge

In contrast to some studies in other countries, which found insufficient TB related knowledge among medical students and/or interns [10] , [11] , [12] , [13] , [14] , the present study found a proportion of approximately 70% correct answers witch was considered adequate TB knowledge among Nepalese interns in general. However, there are other studies that have found adequate knowledge [15] , [16] . Like this study, those studies also found an association between better knowledge and the number of TB patients seen [15] , [16] . All of the theoretical concepts had been taught according to the syllabus set by Kathmandu University, and there were no differences between the colleges in terms of the knowledge score. Students‘ knowledge could be improved by requiring them to spend some time at DOTS clinics and/or see a specified number of TB patients during medical school.

Even though the general knowledge was adequate, there were some serious knowledge gaps with resepct to at-risk groups, main symptoms of TB and sputum tests for both diagnosis and follow-up. Similar important knowledge gaps have been detected in other studies among both students/interns and medical doctors [11] , [13] , [19] , [20] . These knowledge gaps could lead to serious mismanagement of TB patients, under- and over-diagnosis, and late diagnosis of MDR-TB. Twenty-seven percent of the interns did not know the standard treatment for TB, which is another risk for developing drug-resistant TB. Other studies of students and doctors have shown even higher numbers [10] , [14] , [16] .

There was a positive association between having done a TST in the last five years and the knowledge score. In a study from Rome, where all students had done a TST, there was an association between the reported taking of the test and knowledge of TB. Other studies have also reported an association between knowledge and better-integrated preventive measures [21] .

4.3. Attitude

Health care personnel’s attitude towards TB patients is perceived to be important for patients‘ treatment completion and health seeking behavior [13] , [22] . In our study 77% of the interns could imagine themselves working with TB and 97% wanted to learn more about the disease. The mean attitude score was 9.4 of a maximum of 14 and was considered good. However, one-third of the interns felt unable to speak freely about TB. In a study of family physicians in Turkey, almost half of the doctors could not imagine themselves working with TB patients [20] , while in a study of residents in India 51% reported fear, lack of compassion and a tendency to avoid TB patients [23] . Thus, the Nepalese interns in general, have better attitudes, which can serve as a good base for further improvements in knowledge and attitudes towards TB.

4.4. Strengths and limitations

As our questionnaire is based on the WHO‘s KAP template, which has been developed by skilled and knowledgeable developers [17] , the questionnaire has an acceptable professional standing. In addition, the anonymity provided by the survey, which could prevent any negative individual consequences and could reduce the threshold for responding, resulted in a higher sample size. Most of the interns filled out the questionnaires completely, and just three responses had to be removed, while one was excluded from some of the analyses due to insufficient answers. These advantages provided a solid base for our analyses and survey.

The completion rate of the present study was good (69%) and no one declined to answer the questionnaire. However, we do not know exactly how many interns were asked to participate but were told that everybody who was asked, answered the questionnaire. The percentage of interns who participated varied from 49 to 90%.This could have been caused by handing out the questionnaires to only a fraction of the interns at the respective colleges. Due to the time limitation, the questionnaires were handed out to the interns present at the colleges at the time of the study which could have caused a selection bias. However, this bias would have been random and only diluted the results, not led the results in any particular direction. Furthermore, as it was a written questionnaire, some of the participants checked outside of the box, between two boxes, or in too many or too few boxes, all leading to an imprecise estimate of their KAP. As three medical colleges in different parts of Nepal were included, and their results are mostly in conformity, our results might extrapolate to the rest of the country.

Confounders, such as interest, clinical practice and personal experience, could have led to better participation in the survey yielding higher knowledge and attitude scores. The questionnaire was not filled out in a controlled environment, making it impossible to state if the interns used the internet, books or other sources for information. The consequence could be a falsely higher knowledge score. Generalisability could be suboptimal due to the low percentage of included interns, because all the medical colleges were affiliated to KU and none were government-run, and because only three out of 19 medical colleges were included in the study.

5. Conclusion

The surveyed interns had adequate knowledge level about TB, and acceptable attitudes towards the disease in general. However, some knowledge gaps and unacceptable attitudes were also found, including with respect to disease detection and management. As most of the interns could imagine themselves working with TB in the future, and are receptive to more education in this area, TB should be a priority area in medical education including in their post-graduate education. This survey underlines the importance of clinical experience and seeing TB patients during medical college. We suggest that all students gain experience at a TB clinic or see a minimum prescribed number of TB patients during medical schools.

Ethical statement

A verbal request to Regional Committees for Medical and Health Research Ethics Norway clarified that ethical approval in Norway was not needed as no patient information was gathered in the study.

In Nepal ethical approval was received from KUSMS Institutional Review Committee (KUSMS/IRC) (84/17), at NMC the Research Director gave an approval from IRC-NMC, and CMS accepted the KUSMS/IRC.

Declaration of Competing Interest

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

Acknowledgements

We are grateful to Turid Follestad who gave statistical advice. Dr Suresh Kayastha from Dhulikhel, dr Dipendra Khatiwada from CMS, dr Bharati Shakya from NMC and intern Niraj Neupane from NMC all gave important help in the data collection. We also thank all the interns who filled in the questionnaire.

The two medical students received funding from Norwegian University of Science and Technolgoy (NTNU) for their thesis work. No other funding was given.

Authors contribution

Anna Berg-Johnsen; she is first author together with Synne Oasaland Hådem. They both participated in the planning of the project, did the data collection, and wrote their student thesis on this study. Afterwards, she did more statistical analysis and participated in the writing of the manuscript.

Synne Osaland Hådem : she is first author together with Anna Berg-Johansen. They both participated in the planning of the project, did the data collection, and wrote their student thesis on this study. Afterwards, she participated in the writing of the manuscript.

Dr Dipesh Tamrakar was the local supervisor in Nepal. He helped out planning the study and during the data collection. He read the manuscript and gave input and comments.

Ingunn Harstad : supervised the planning of the project, the data collection and analyses of data. She revised the manuscript critically, finalized the manuscript for submission and is the corresponding author.

Scoring system for calculating attitude score

Scoring system for calculating knowledge score

Questionnaire with information sheet and marked correct answers