Understanding pretreatment loss to follow-up of tuberculosis patients: an explanatory qualitative study in Chennai, India

Abstract

IntroductionPretreatment loss to follow-up (PTLFU)—dropout of patients after diagnosis but before treatment registration—is a major gap in tuberculosis (TB) care in India and globally. Patient and healthcare worker (HCW) perspectives are critical for developing interventions to reduce PTLFU.MethodsWe tracked smear-positive TB patients diagnosed via sputum microscopy from 22 diagnostic centres in Chennai, one of India’s largest cities. Patients who did not start therapy within 14 days, or who died or were lost to follow-up before official treatment registration, were classified as PTLFU cases. We conducted qualitative interviews with trackable patients, or family members of patients who had died. We conducted focus group discussions (FGDs) with HCWs involved in TB care. Interview and FGD transcripts were coded and analysed with Dedoose software to identify key themes. We created categories into which themes clustered and identified relationships among thematic categories to develop an explanatory model for PTLFU.ResultsWe conducted six FGDs comprising 53 HCWs and 33 individual patient or family member interviews. Themes clustered into five categories. Examining relationships among categories revealed two pathways leading to PTLFU as part of an explanatory model. In the first pathway, administrative and organisational health system barriers—including the complexity of navigating the system, healthcare worker absenteeism and infrastructure failures—resulted in patients feeling frustration or resignation, leading to disengagement from care. In turn, HCWs faced work constraints that contributed to many of these health system barriers for patients. In the second pathway, negative HCW attitudes and behaviours contributed to patients distrusting the health system, resulting in refusal of care.ConclusionHealth system barriers contribute to PTLFU directly and by amplifying patient-related challenges to engaging in care. Interventions should focus on removing administrative hurdles patients face in the health system, improving quality of the HCW-patient interaction and alleviating constraints preventing HCWs from providing patient-centred care.

Understanding the gaps in DR-TB care cascade in Nigeria: A sequential mixed-method study

“…On the health system level, in addition to improving coverage and access to GeneXpert testing, our findings suggest that training providers to recognize individuals at risk for DR-TB and on stigma and discrimination could play a role in reducing the very large gaps 1 and 2 in the care cascade [59] , [60] . Additionally, healthcare providers felt under-resourced and unsupported to provide adequate care, agreeing with findings in a recent study from India [61] .…”

Contributing Factors in the Tuberculosis Care Cascade in India: A Systematic Literature Review

“…At the individual level, diverse factors were documented. On a broader scale, poverty, 17,32 unemployment and financial constraints, 10,17,[24][25][26][27]31,33,38 migration, 26 illiteracy 40 stands as major factors, as documented in most of the studies. Followed which, awareness about the disease/ availability of services, 17,21,24,25,28,40 ignorance or selftreating symptoms, 10,18,20,21,24,26,28 myths/wrong beliefs, shame/confidentiality issues 21 found to be significant contributors.…”

“…Followed which, awareness about the disease/ availability of services, 17,21,24,25,28,40 ignorance or selftreating symptoms, 10,18,20,21,24,26,28 myths/wrong beliefs, shame/confidentiality issues 21 found to be significant contributors. In addition to it, personal behaviours like addiction to alcohol, tobacco, smoking 17,18,21,[26][27][28][29]32,33,40 also contribute to the care cascade. Other personal factors that remained are fear of diagnosis, fear of the outcome measures, fear of loss of occupation, fear of society, 19,27 etc.…”

“…Other personal factors that remained are fear of diagnosis, fear of the outcome measures, fear of loss of occupation, fear of society, 19,27 etc. Focusing on the individual factors with more specific to TB treatment, factors like the inability to collect the medicine, 17 travel-related (transportation, cost), 18,31 selfwithdrawal once the symptoms subside, 18,19 inability to produce sputum, 20 past unpleasant experience of DOT, 20 multiple visits/consultation of health-care providers, 23,32 delays in approaching provider after leaving a previous provider, 10,26,35 delays in getting the test done and collecting results, self-refusal to get the test done, 10,26 dissatisfied with services, 40 cost of diagnosis and treatment 38 etc. remained contributing factors towards the outcome of the TB care cascade.…”

Evaluation of underweight status may improve identification of the highest-risk patients during outpatient evaluation for pulmonary tuberculosis

“…Even when testing occurs, it may not provide a prompt diagnosis for reasons that include equipment downtime [ 5 ], long turnaround times for off-site testing [ 6 ], or the suboptimal sensitivity of even the most sensitive rapid diagnostic tests [ 7 ]. Delays in obtaining a diagnostic result contribute to high risks of pretreatment loss to follow-up [ 8 ]. For patients or settings in which the risk of loss to follow-up is high and rapid bacteriological diagnosis is impractical, clinicians must often decide whether to start treatment empirically for the highest risk patients based on clinical presentation alone [ 9 ].…”