Person-centred care in practice: perspectives from a short course regimen for multi-drug resistant tuberculosis in Karakalpakstan, Uzbekistan

Abstract

Introduction Person-centred care, an internationally recognised priority, describes the involvement of people in their care and treatment decisions, and the consideration of their needs and priorities within service delivery. Clarity is required regarding how it may be implemented in practice within different contexts. The standard multi-drug resistant tuberculosis (MDR-TB) treatment regimen is lengthy, toxic and insufficiently effective. 2019 World Health Organisation guidelines include a shorter (9–11-month) regimen and recommend that people with MDR-TB be involved in the choice of treatment option. We examine the perspectives and experiences of people with MDR-TB and health-care workers (HCW) regarding person-centred care in an MDR-TB programme in Karakalpakstan, Uzbekistan, run by Médecins Sans Frontières and the Ministry of Health. Methods A qualitative study comprising 48 interviews with 24 people with MDR-TB and 20 HCW was conducted in June–July 2019. Participants were recruited purposively to include a range of treatment-taking experiences and professional positions. Interview data were analysed thematically using coding to identify emerging patterns, concepts, and categories relating to person-centred care, with Nvivo12. Results People with MDR-TB were unfamiliar with shared decision-making and felt uncomfortable taking responsibility for their treatment choice. HCW were viewed as having greater knowledge and expertise, and patients trusted HCW to act in their best interests, deferring the choice of appropriate treatment course to them. HCW had concerns about involving people in treatment choices, preferring that doctors made decisions. People with MDR-TB wanted to be involved in discussions about their treatment, and have their preference sought, and were comfortable choosing whether treatment was ambulatory or hospital-based. Participants felt it important that people with MDR-TB had knowledge and understanding about their treatment and disease, to foster their sense of preparedness and ownership for treatment. Involving people in their care was said to motivate sustained treatment-taking, and it appeared important to have evidence of treatment need and effect. Conclusions There is a preference for doctors choosing the treatment regimen, linked to shared decision-making unfamiliarity and practitioner-patient knowledge imbalance. Involving people in their care, through discussions, information, and preference-seeking could foster ownership and self-responsibility, supporting sustained engagement with treatment.

Treatment Compliance of Multidrug Resistant Tuberculosis in Uzbekistan: Does Practice Follow Policy?

“…While in many regions, the compliance was as high as 98%, in some, it was significantly lower, reaching 8% in the Republic of Karakalpakstan. The reasons are yet to be explored; however, authors speculate that this may be related to the fact that Médecins Sans Frontières was involved in organizing DR-TB treatment in the Republic of Karakalpakstan, which may be slightly different from that recommended in the national guidelines [ 18 , 19 , 20 ]. The second factor that was associated with having a higher risk of non-compliance was not having a laboratory confirmation of the resistance.…”

Trends, Characteristics and Treatment Outcomes of Patients with Drug-Resistant Tuberculosis in Uzbekistan: 2013–2018

“…As previously stated, the low numbers reported with mono- and poly-resistant TB may have been due to poor coverage of drug-susceptibility testing for these first-line drugs. The treatment regimens were not all the same during the six year period, and in the Republic of Karakalpakstan, shorter regimens have already been piloted since 2013 by MSF [ 41 , 42 ]. The selection of Tashkent city for the risk factor analysis means we cannot be sure about national representativeness of the findings.…”

Scaling Up Molecular Diagnostic Tests for Drug-Resistant Tuberculosis in Uzbekistan from 2012–2019: Are We on the Right Track?

“…The number of GeneXpert instruments in the country progressively increased particularly in the last three years and, in general, deployment was in line with the regional population size and regional TB incidence rates. There was, however, a greater concentration of GeneXpert instruments in the Republic of Karakalpakstan where Médecins Sans Frontières (MSF) has been working since 2003 and supporting MDR-TB treatment optimization since 2013 [ 17 , 18 , 19 ]. GeneXpert instruments were also deployed in HIV care facilities to support the screening and detection of TB amongst people living with HIV who are at the highest risk of TB [ 20 ] and in the penitentiary sector where there is also a high burden of TB and DR-TB transmission [ 21 ].…”