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    Understanding factors influencing health outcomes of drug-resistant tuberculosis (DR-TB) patients attending the Programmatic Management of Drug-Resistant Tuberculosis (PMDT) model of care in Pakistan
    Abbas, Shazra ( 2021)
    Background: Drug-Resistant tuberculosis (DR-TB) is a complex form of TB that develops when the causative bacteria (Mycobacterium tuberculosis) become resistant to anti-TB drugs used for the treatment of primary TB. A rise in DR-TB reflects a weak health system's response to primary TB. Pakistan is ranked fifth for primary TB and fourth for DR-TB incidence in the world. In response, the national TB program (NTP) in Pakistan launched the Programmatic Management of Drug-Resistant Tuberculosis (PMDT) model of care in 2010. This model provides free healthcare services and a financial support package to DR-TB patients through specialised PMDT clinics established across the country. Despite this dedicated model of care, health outcomes of DR-TB patients remain suboptimal, with consistently low treatment success rates (TSR) and high lost-to-follow up (LTFU) and high mortality rates compared to the intended targets. The NTP, amongst other published literature, pointed towards several 'environmental' factors such as travel and its associated costs and 'treatment-related' factors such as side-effects of the drugs as being responsible for these suboptimal health outcomes. Aim: To contribute to a better understanding of factors influencing health outcomes of DR-TB patients attending PMDT clinics in Pakistan. Methods: A Practice Theory informed ethnographic study was conducted at three PMDT clinics in the Khyber-Pakhtunkhwa province in Pakistan. The analysis drew on nine months of participant observation, semi-structured in-depth interviews with the study participants, and a quantitative survey. The study participants consisted of DR-TB patients registered at the three study sites, PMDT staff, and the DR-TB managers. In total, 61 in-depth interviews were conducted with patients on-treatment, and there were 22 interviews with patients who were LTFU, describing their healthcare experiences. Thirteen interviews were conducted with the PMDT staff, examining healthcare as they understood and practiced it. At the end of the data collection at the three study sites, four in-depth interviews were conducted with the DR-TB managers to help understand the PMDT model as envisioned and prioritised at the policy level. A total of 152 patients completed the survey. Findings: The PMDT clinic staff had a disproportionate emphasis on performing only a few activities. These were collecting patients' sputum samples, sending patients for laboratory tests, and dispensing them DR-TB medicines. The staff were mostly oblivious to other essential health systems' inputs for better health outcomes such as responding to patients' queries and doubts, building trusting relationships, and creating compassionate interactions between treating staff and patients. These healthcare practices were shaped by the PMDT indicators and monitoring focus of the DR-TB managers, where achieving outputs such as dispensing medicines to patients or dispatching sputum samples to laboratories were prioritised and valued more than building patients' competencies to understand and adhere well to their treatment. Consequently, patients were often confused and overwhelmed with the demands of their long and complex treatment course. Many were taking their medicines incorrectly or not at all, while others were discontinuing treatment believing that they were wrongly diagnosed or because they were being mistreated by the PMDT staff. A further examination of the PMDT model, using the World Health Organisation's (WHO) endorsed three health system goals framework, revealed the influence of the conventional healthcare practices and the broader sociocultural environment in Pakistan in reducing this otherwise comprehensive healthcare model to only a small set of activities with potentially negative consequences for patients' health outcomes. Conclusions: There is currently limited recognition in the PMDT model of the significance of the user experience and respectful care in improving health outcomes. These limitations in the PMDT model have their origins in Pakistan's broader health system and culture where treating 'disease' is considered a priority and where patients' rights as human beings are less valued. Consequently, despite receiving quality medicines, and having access to free healthcare, patients had many grievances and mistrust in the health system, which in turn led to their suboptimal health outcomes. By developing appropriate indicators that examine the health system's responsiveness to patients' expectations and by better tailoring the monitoring and evaluation processes with these indicators, the performance of this model of care can be improved.