Factors contributing to pre-treatment loss to follow-up in adults with pulmonary tuberculosis: a qualitative evidence synthesis of patient and healthcare worker perspectives

Figures & data

Figure 1. PRISMA flow diagram.

Table 1. Characteristics of included studies in the qualitative evidence synthesis for pre-treatment loss to follow-up.

Author, year of publication	Country, setting	Study aims	Study design	Participants (number); sex (number, %)	Data collection methods	Data analysis methods
Squire 2005	Malawi Low-income High TB/HIV burden Urban District hospitals, health centres, public laboratories	To locate smear-positive pulmonary tuberculosis patients who were identified during the first 6 months of 2000 but did not start treatment (‘lost cases’) To describe these patients’ pathways to diagnosis, health status, and socio-demographic characteristics To explore why these patients did not start treatment	Qualitative, critical incidents narrative interviews	Patients (n = 19); female (n = 10, 53%), male (n = 9, 47%) HCWs (n = 46)	Focus group discussion Key informant interviews	Frame-work analysis
Sharma 2017	India Lower middle income High TB, TB/HIV, and MDR-TB burden Rural, peri-urban, and urban Chest clinics equivalent to District TB centres	To examine the various reasons for pre-treatment loss to follow-up among new sputum-positive cases diagnosed under the Revised National TB Control Programme in Delhi To propose an intervention model to reduce pre-treatment loss to follow-up based on the provider’s feedback and the health-seeking behaviour of patients	Mixed methods, qualitative methods used exploratory design	Focus group discussion (n = 9): paramedics, laboratory technicians, TB health visitors TB district managers (n = 24); sex not specified	Focus group discussion Brainstorming session	Thematic analysis
Mwansa-Kambafwile 2020*	South Africa Upper middle income High TB, TB/HIV, and MDR-TB burden Johannesburg (urban)	Exploring reasons for TB’s initial LTFU from the perspectives of TB programme managers and outreach WBOT programme managers, with a focus on the WBOT’s (potential) role in reducing initial LTFU	Qualitative, exploratory design	Healthcare managers (n = 9); female (n = 6, 67%), male (n = 3, 33%)	In-depth interviews	Frame- work analysis
Stalin 2020	India Lower middle income High TB, TB/HIV, and MDR-TB burden Peripheral health Institutions	Measure the effectiveness of the new intervention package, developed based on a qualitative study in reducing PTLFU of all (TB) patients diagnosed and referred for treatment from medical colleges to peripheral health institutions	Mixed methods, qualitative, exploratory design	Patients, HCWs, laboratory workers, healthcare managers, TB health visitors (n = 34); sex not specified	In-depth interviews	Thematic analysis
Thomas 2020	India Lower middle income High TB, TB/HIV, and MDR-TB burden Rural, urban National Tertiary Referral and Teaching Hospitals Primary and secondary health facilities	To analyse qualitative data on PTLFU from TB patients and HCWs in Chennai, one of India’s largest cities	Qualitative-grounded theory	Patients (n = 20), health visitors (n = 18), laboratory workers (n = 17), senior treatment supervisors (n = 18), and family members of PTLFU patients who had died (n = 13) Patients (n = 33); females (n = 3, 9%), males (n = 30, 91%) HCWs (n = 40); females (n = 10, 25%), males (n = 30, 75%)	Focus group discussion, In-depth interviews	Thematic analysis

Abbreviations: HCWs: healthcare workers; LTFU: loss to follow-up; PTLFU: pre-treatment loss to follow-up; TB: tuberculosis; WBOT: Ward-based Outreach Team.

*The publication refers to initial loss to follow up though the definition is similar to PTLFU, that is why we included the paper.

Figure 2. Summary of factors contributing to pre-treatment loss to follow-up.

Table 2. Representative illustrations of patient-related factors contributing to pre-treatment loss to follow-up.

Main theme	Subtheme	Illustrations from the studies
Patients’ knowledge, attitudes and behaviours about TB and its management	Knowledge about TB and its management	Q1. “Some patients feel that TB is a result of ‘‘bad’’ air. So, to have a ‘change in environment, they visit Vrindavan (Old TB sanatorium faith healers exist in Vrindavan) for fresh clean air.” (Brainstorming session of programme managers, India).
	Patients’ relocation	Q2. Patient relocation emerged strongly as a reason. ‘ … . patients are always relocating.’ (Programme manager, South Africa).
	Wrong contact address	Q3. ‘Patients give wrong phone numbers and wrong addresses. Unfortunately, this is only discovered at the point of defaulter tracing.’ (TB programme managers, South Africa).
	Care seeking at multiple sites ‘Shopping around’	Q4. ‘They like to confirm, and they will come here and test and if they are positive here, they will go to another facility to test. Maybe if still not satisfied, they will go to another.’ (Programme manager, South Africa).
	Lack of faith in government healthcare facilities	Q5. ‘Patients did not have faith in the government-run health system and doubted the quality of free drugs available at the DOT centres.’ (Brainstorming session of TB programme managers, India).
	Alcohol and drug use	Q6. “They think, ‘if we take tablets, we can’t drink alcohol, so just to continue alcohol, they don’t want to take drugs … .” (TBHV, India).
Patients’ motivation to attend TB appointments	Lack of family support	Q7. ‘Sometimes patients get worse after testing, get admitted to hospital and therefore fail to return for the results. It is important that a relative or friend informs the facility so that the patient is not labelled as LTFU.’ (Programme manager, South Africa).
	Stigma	Q8. ‘These days whenever the patient has been diagnosed as TB patient, they always suspect that he or she is HIV positive.’ (FGD, 2, Malawi).
		Q9. “I came here without my family members’ knowledge, as they otherwise would not allow me to visit (this TB specialty hospital). If others learn that I am visiting (this hospital), they will tag me as being a TB patient.” (Woman without a prior treatment history, India).
	Lack of housing	Q10. “We don’t have a house; we lived on the platform (Indian term for homelessness) for 9 months. (Family member of a man without a prior treatment history, India).
	Poverty	Q11. ‘Costs mentioned included transport, food, daily necessities, and, in the case of admission in hospitals, medical expenses such as drugs.’ (Female patient, Malawi).

Abbreviations: FGD: Focus group discussion; HCW: healthcare workers; LTFU: loss to follow up; TB: tuberculosis; TBHV: TB health visitor.

Table 3. Representative illustrations of healthcare worker-related factors contributing to pre-treatment loss to follow-up.

Theme	Subtheme	Illustrations from the studies
HCWs’ knowledge, attitudes, and behaviours about TB and its management (reported by HCWs)	Knowledge about TB and its management	Q12. ‘Patient is sputum positive but doesn’t receive treatment.’ (FGD of TBHVs and LTs India). Q13. ‘They give the sputum [the sputum sent to the laboratory] the outcome, they say it is negative, but the patients still cough … and we ask him to give us again we do the same, they found him negative, and we tell him do not be annoyed give us sputum sample for the third time and we took to the lab they say it is negative.’ (FGD of HCWs, Malawi).
	HCW attitudes towards their work	Q14. ‘Participants reported that staff generally do not like to work in the TB room and are reluctant to acquaint themselves with systems and processes on TB patient management’ (TB programme managers, South Africa).
		Q15. Senior Treatment Supervisor 4: ‘Few patients don’t return, so we can’t do anything more (to retrieve them).’ Moderator: ‘So, you never register that case?’ Senior Treatment Supervisor 5: ‘Yes, we never register that case.’ (Excerpt from a Senior Treatment Supervisor FGD, India).
	Lack of patient counselling	Q16. ‘I think it’s probably … patients are not counselled when they are tested … you know like in HIV. So, the patients do not know the importance of starting treatment soon. So, they just go home. And remember they test and are given a date when to come back and this is where the gap is. They normally don’t come back on their own.’. (Programme manager, South Africa).
	Stigmatizing behaviour	Q17. ‘Doctors don’t have enough time to talk to patients. The staff nurse can counsel patients, but they treat patients as untouchables.’ (Participant in a health visitor FGD, India).
	Disclosure of the patient’s diagnosis	Q18. ‘(When the TB diagnosis has been disclosed), patients will ask us, “why did you share my information with the (community)leader?… Who gave you the right to share information regarding my disease condition with others? What will others think about me?”.’ (Participant in a health visitor FGD describing the type of; language used by patients after disclosure of diagnosis, India).
HCWs’ attitudes and behaviours about TB and its management (reported by patients)	Stigmatizing behaviour	Q19. ‘They (staff in the hospital) treated me in an irreverent way.’ (Family member of a man without a prior treatment history, India).
	Scolding	Q20. ‘Some of (the HCWs) talked nicely to me, but the doctor scolded me, so I didn’t return to pick up my test result.’ (Woman without a prior treatment history, India).

Abbreviations: DMCs: Designated microscopy centres; FGD: Focus group discussion; HCWs: healthcare workers; TB: tuberculosis.

Table 4. Representative quotations on healthcare system-related factors contributing to pre-treatment loss to follow-up.

Theme	Subtheme	Illustrations from the studies
Accessibility and availability of facilities for TB care	Frequent hospital visits	Q21. ‘Many patients are not able to come to the hospital several times, especially old people. It will be very helpful if the number of required visits is reduced.’ (Woman without a prior treatment history, India).
	Long distance	Q22. “Patients were not referred to the correct PHIs where they reside. Therefore, the distance of DOTS centres from patients’ houses was long which made them inaccessible.” (India).
	Long waiting times	Q23. ‘ … give excuses that they are long queues.’ (WBOT district coordinator, South Africa). Q24. ‘ … many patients reported of unpleasant experience at medical college hospital such as … . long waiting period….’ (Patients, India).
	Lack of pharmacy supplies	Q25. ‘There was also unavailability of drugs at the time of reporting to the referred DOTS centre. Patients were asked to come back after some time, but they did not report back.’ (Patient, India).
Human resource and financial constraints	Costs HCWs incurred	Q26. ‘For phone calls (with patients or other HCWs) we are spending almost 1000 rupees per month from our own pocket.’ (Participant in a Senior Treatment Supervisor FGD, India).
	Lack of reimbursement for the health workers (costs incurred out of pocket)	Q27. ‘Most villages do not have any buses … those of us who have two-wheelers make these visits (to track PTLFU cases), but we are not receiving any reimbursement for petrol costs.’ (Participants in a health visitor FGD, India).
	High workload	Q28. ‘We need manpower … one Laboratory Technician is working at four DMCs. If I collect the first sputum of the patient today (Friday), I will get a chance to collect the second sputum of that patient only on the next Friday.’ (Participant in a Laboratory Technician FGD, India).
	Frequent staff rotation	Q29. ‘Participants suggested less staff rotation in the TB room so that continuity of optimal TB patient care is guaranteed.’ (TB programme manager, South Africa).
	Teamwork among the PHC in the RNTCP	Q30. ‘ … And then if someone comes to stand in for the TB sister, they will not attend to the patient thoroughly as they’re supposed to, sometimes not even informing them about the importance of ensuring they come back for the results.’ (Programme manager, South Africa).
Challenges in internal and external communication in the TB healthcare facilities	Poor referral systems	Q31. ‘They didn’t inform me properly about the disease. I was referred to a hospital where they told that I was supposed to go to some other hospital which is quite far from home….’ (Male patient, India).
	Lack of and poor communication between HCWs and the patients	Q32. ‘They referred me to a hospital for treatment … But they did not say anything about my health condition and my disease.’ (Man without a prior treatment history, India).
		Q33. ‘Many patients said that they did not report due to their unpleasant experience at medical college hospital such as harsh comments by health staff, long waiting period and no proper briefing and counselling about the disease.’ (Patients, India).
		Q34. ‘Non-cooperative staff at DOT centres, poor patient-provider interaction, poor communication skills of TBHV/LT.’ (Brainstorming session of TB programme managers, India).
Education and training	Training on TB, patient management, and counselling services	Q35. ‘Participants suggested less staff rotation in the TB room and TB patient management education to all facility clinical staff so that continuity of optimal TB patient care is guaranteed.’ (TB programme managers, South Africa).
Management and leadership in the TB programme	Limitations in the HCW’s mandate	Q36. ‘The WBOTs cannot refer the patients to their team leader, if the latter is an enrolled nurse, for treatment initiation because enrolled nurses cannot prescribe medications in the South African healthcare system.’ (Programme manager, South Africa).
	Teamwork	Q37. ‘There are some issues when TBHV is on leave. Other staffs are busy with their own works. They are not willing to take up additional responsibilities.’ (Senior treatment supervisor, India).
	Lack of respect for junior staff	Q38. ‘I can’t go and talk to the ward patient when he is available, because, at the same time, I will be called by the medical officer to do other work … I can’t tell the doctors about the challenges I face.’ (Participant in a Health Visitor FGD, India).
		Q39. ‘They call on me while I’m trying to do my work … . They send someone to get me saying, “call that RNTCP girl”.’ (Participant in a health visitor FGD, India).

Abbreviations: DOTS: Directly Observed Treatment centres; FGD: Focus group discussion; HCWs: healthcare workers; IDI: In-depth Interview; LTFU: loss to follow up; PHC: Primary health centre; PHIs: peripheral health institutions; PTLFU: pre-treatment loss to follow-up; RNTCP: Revised National TB Control Programme; TB: tuberculosis; TBHV: TB health visitor; TBHV/LT: TB health visitor/Laboratory technician; WBOT: Ward-based Outreach Team.