Introduction Pretreatment 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.
Methods We 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.
Results We 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.
Conclusion Health 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.
- health systems
- qualitative study
- health services research
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Handling editor Stephanie M Topp
BET and RS contributed equally.
Contributors BET led project management and supervision of field data collection, and she supported study conceptualisation, design and data interpretation. S Sellappan contributed to study design, project management and field data collection. CS contributed to project management and field data collection. JL contributed to study conceptualisation, study design and facilitated field data collection. SL contributed to field data collection and data entry. AR contributed to field data collection and data entry. BJ contributed to field data collection and data entry. SK contributed to field data collection and data entry. SA contributed to field data collection and data entry. ML contributed to data analysis, data interpretation and initial drafting of the manuscript. AG contributed to data analysis, data interpretation and initial drafting of the manuscript. KM contributed to study conceptualisation, study design, acquisition of funding and data interpretation. S Swaminathan contributed to study conceptualisation, study design and data interpretation. RS led study conceptualisation, study design, acquisition of funding, data analysis, data interpretation and initial drafting of the manuscript. RS also contributed to data entry, project management and supervision of field data collection. All authors provided critical revisions to the initial manuscript draft and approved the final paper.
Funding RS and the field research team were supported by a Fogarty Global Health Equity Scholars Fellowship (NIAID R25 TW009338). RS also received support from a Harvard Catalyst KL2/Catalyst Medical Investigator Training Award (KL2 TR001100) and a Doris Duke Clinical Scientist Development Award. The funding bodies had no role in study design, data collection, data analysis, data interpretation or manuscript writing.
Competing interests None declared.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting or dissemination plans of this research. Refer to the Methods section for further details.
Patient consent for publication Not required.
Ethics approval The research protocol for this study was approved by the Institutional Ethics Committee of the National Institute for Research in TB (NIRT) (FWA00005104) on 29 December 2014 and the Institutional Review Board of Brigham and Women’s Hospital (Partners Healthcare) (FWA00000484) on 13 January 2015. Written informed consent was collected from all PTLFU patients who agreed to participate in qualitative interviews. In addition to anonymising identifying patient information, in many cases we have anonymised names of health facilities if patient or family member comments might reflect poorly upon that facility.
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement Data are available upon request. The qualitative data have not been included as a supplement because this would likely compromise the individual privacy of patients, as it may be possible to identify specific individuals based on the in-depth narratives. Requests for the de-identified qualitative data set can be made by contacting Dr Beena Thomas (email@example.com), although access to these data may be subject to Indian Council of Medical Research policies.
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