Introduction
The standard treatment for multi-drug resistant tuberculosis (MDR-TB) is lengthy, toxic, and insufficiently effective [
1], with success rates of just 56% in 2018 globally [
2]. The treatment landscape for drug resistant TB is changing, and new drugs are available for the first time in over 40 years [
3,
4]. Clinical trials of 15 regimens are underway, with the aim of better tolerability, shorter treatment durations, and new drug combinations, potentially delivering improved treatment regimens [
5] and more acceptable models of care.
Person-centred care reflects a holistic model of health that considers the person as central to the process of care, and is flexible to individuals’ needs, choices, and preferences [
6,
7]. Patients are situated in their social and biological entirety, with attention given to their identities, subjectivity, environment, and social situation [
8,
9]. We define person-centred care as the involvement of people in their care, which includes shared decision-making [
6]. Rather than passively receiving health care, the patient is considered an active participant [
10]. There is not a one-size-fits-all approach to person-centred care, rather, approaches should be grounded in the reality of how people navigate the pathway from symptoms to cure [
11].
The 2019 World Health Organisation (WHO) guidelines for the treatment and management of TB include a short-course regimen (SCR) of older TB drugs lasting 9–11 months, and a longer regimen of 18–20 months that includes new drugs such as bedaquiline [
12]. The guidelines emphasise involving people with MDR-TB in their care, and recommend shared decision-making between practitioners and patients regarding the choice of treatment option, for example whether the SCR or a regimen containing new drugs [
12]. Uncertainty around the pros and cons of these options requires navigation by patients involved in treatment decisions. Such choices can be complex, and evidence regarding the efficacy, tolerability and implications of various treatment options remains limited. It is important to consider the views of people with MDR-TB regarding their involvement in such choices and of the practitioners implementing the new guidelines. And, since adopting a person-centred approach within the TB response is an internationally recognised priority [
7], it is imperative to explore and understand the context-specific preferences and needs of people with MDR-TB regarding their treatment and care.
Methods
A qualitative study was conducted in Karakalpakstan, Uzbekistan, involving interviews with people with MDR-TB and health-care workers (HCW) during May–July 2019. We aimed to examine perceptions and experiences relating to person-centred care, including shared decision-making for treatment options, to consider how the concept may be realised in practice.
Study setting
Uzbekistan, situated in Central Asia and with a population of 32.96 million in 2018 [
13], had an estimated MDR-TB incidence of 4.7 per thousand population (and TB incidence of 23 per thousand population) in 2018 [
2]. Additionally, 18,496 individuals were notified as having TB, and 15% of new TB cases and 34% of previously treated cases had drug resistance [
2]. The health system has undergone several major reforms since independence from the Soviet Union in 1991, and is largely structured around decentralised policlinics, as well as hospitals [
14]. There is a high coverage of drug sensitivity testing, 88% of notified TB cases were tested with WHO-recommended rapid diagnostics at the time of diagnosis, and MDR-TB treatment coverage was around 50% in 2018 [
2]. Reported MDR-TB treatment success is in line with the global average, at 57% [
2].
Karakalpakstan is an autonomous region in Uzbekistan, where Médecins Sans Frontières (MSF) and the Ministry of Health have collaboratively provided decentralised, comprehensive TB care since 1998. At the time of this study, project guidelines recommended person-centred care defined as: ambulatory treatment from day one for most drug-sensitive and DR-TB patients; early detection and management of side effects, patient education about disease and treatment (both pre-treatment and as an ongoing process during treatment); adherence counselling provided by counsellors or adherence support nurses; provision of enablers including transport support and food supplements (with social workers where financial instability is identified). Treatment was administered through directly observed treatment (DOT), whereby patients are observed taking their daily medication, and usually travel each day to receive treatment from a treatment location such as a policlinic. Certain patients may receive home-based care, whereby medical personnel travel to the patient’s home to administer treatment, in instances where the individual is unable to travel to the treatment location and based on an assessment of their needs (and consideration of the resources). Treatment for TB and MDR-TB is provided free of charge, funded by the Ministry of Health, Global Fund and MSF.
Historically, approaches to treatment decision-making in the setting have been paternalistic, with doctors deciding on the appropriate course of treatment and care for patients. Shared decision-making for treatment option was to be introduced in 2019 guidelines, implemented shortly after this study. However, it was not clear exactly how treatment decisions would be shared in practice, and new guidelines stated that deciding between the SCR and conventional regimens should be based on patient choice (as well as clinical factors). This therefore offered a pivotal moment to explore perspectives on person-centred care and shared decision-making for treatment option, to ensure that delivery of treatment and care aligns with patients’ priorities and values.
Participant recruitment
All patient-participants were aged over 18 years and were on or had completed the SCR, or had started on the SCR and transferred out to standard treatment, bar one individual who was on standard treatment (Table
1). Purposive, maximum variation approaches to sampling were adopted to include patients with a wide range of experiences relating to treatment and care, and to balance participants for gender and age (Table
1). Recruitment continued until evidence of data saturation was obtained, whereby adding further participants did not generate new findings. Patients for inclusion were identified from the project SCR database by SH, following stratifying the sample for age, gender and treatment category. Identified patients were then recruited by a gatekeeper from within the project, either a counsellor or a member of the medical team, who introduced the study and asked if the individual would be willing to discuss the possibility of participation.
Table 1
Patient characteristics
Sex |
Women | 12 |
Men | 12 |
Age (years) |
18–24 | 8 |
25–34 | 9 |
35–44 | 2 |
45–58 | 5 |
Treatment category |
On SCR treatment | 15 |
Completed/cured | 5 |
Treatment failure | 3 |
LTFU | 0a |
Relapse | 1 |
Transferred to or on standard of care | 4 |
HCW participants were recruited purposively to include a range of roles relating to treatment and care delivery: doctors, usually the first point of contact for patients during diagnosis and treatment initiation; nurses, who administer daily medication and provide support throughout treatment; and counsellors who may provide support following diagnosis or during treatment, for example if someone is struggling to sustain engagement with treatment. Again, the number of participants for each employment position were determined based on evidence of data saturation, thereby theoretical approaches to sampling were employed in addition to sampling being purposive. At the time of this study, counselling was focused on supporting those on new drug regimens and was not routinely provided to those engaging with the SCR, and therefore fewer counsellors were recruited for (Table
2). HCW were approached by a research assistant, who introduced the study and invited participation.
Table 2
Health-care worker characteristics
Sex |
Women | 15 |
Men | 5 |
Role |
Doctor | 11 |
Nurse | 5 |
Counsellor | 4 |
Employer |
Ministry of Health | 12 |
Médecins Sans Frontières | 8 |
Data collection and analysis
In-depth interviews were conducted following informed written consent, including for audio recording, to which all participants agreed. Interviews were based on topic guides, which served as reminders for the interviewer (SH), and were flexible and participant-led, with the order of topics depending on the flow of participants’ narratives. Interviews with patients explored their experiences engaging with TB treatment and care, how involvement in care was experienced, and their views about being involved in treatment choices and other ways in which they would like to be involved. Interviews with HCW explored experiences diagnosing people with MDR-TB, how the treatment regimen is decided, HCW views about involving people in choices about their care, and how people are and may be more involved in their care.
Interview topic guides were piloted and adapted. For example, in the first few interviews it was difficult to explore participants’ views about being involved in treatment choices, as the concept was too abstract, therefore scenarios and hypothetical examples were incorporated. Most participants were interviewed once; the option of repeat interviews was discussed at the initial meeting to enable further exploration of emerging topics and explore changes in accounts over time. The generation of data and analytical process were iterative, with analytical thinking and theorising beginning at the point of data collection, which allowed for approaches to be adapted to include more of certain groups of participants, e.g. doctors, and further explore emerging themes.
Data were analysed thematically by SH, using coding to identify emergent themes, patterns, and concepts. Discrepancies from majority themes were actively sought to test the robustness of emerging themes and understand the range of perspectives relating to each category. Transcripts were analysed manually using open, descriptive, in vivo coding, and a coding framework was developed using Nvivo 12 to organise and sort data. Codes and categories were constantly compared within and between participants and findings were raised to a conceptual level, while aiming to remain grounded in participants’ accounts. Attention was paid to the role of the researcher in shaping the data, and analytical codes and categories were shared with NG and BS. Pseudonyms are used to protect participants’ confidentiality, with patient-participants being reflected by P(number), and HCW-participants by HCW(number).
Discussion
We found that the concept of people with MDR-TB choosing their treatment regimen was unfamiliar, and there was a preference for doctors being responsible for this choice. Patients wanted to be involved in discussions regarding their treatment and care, to have more information and understanding, and have their preferences sought, rather than being responsible for the decision itself. Information, understanding, and involvement in care appeared to increase individuals’ sense of ownership and responsibility for their treatment-taking, which could foster motivation for continuing with it. These findings highlight the importance of considering approaches to person-centred care that are contextually adapted and tailored to individuals’ preferences, comfort, and needs.
Within the rationale of autonomy, choice is assumed to be good as by making choices we become in control of our own lives [
15]. However, this binary framing risks overlooking the complex processes involved in individuals’ decision-making [
16], which are socially embedded and situated beyond the medical realm, as has been evidenced in the context of HIV [
17,
18]. Mol argues that making decisions about our own care can be difficult, with fear and emotion potentially clouding judgement, and with rational, objective choices being near impossible when risks are unknown and the future is uncertain [
15]. We found that the concept of shared practitioner-patient treatment decision-making was unfamiliar and abstract in the study context, and that giving patients the responsibility for decisions relating to their treatment may actually cause stress and erode the concept of “good care” [
15].
In our study, many patients felt they lacked sufficient knowledge to make an informed choice about their treatment regimen, seeing doctors as best placed to make this choice, and fearing the consequences of making a wrong decision. Evidence from cancer-related research has found that patients can experience anxiety about taking responsibility for the outcome of treatment [
19], and want to share the responsibility for decision-making [
20]. In our study, patients asserted not feeling comfortable being responsible for treatment decisions, fearing blame if they made the wrong choice. This may be exacerbated by the infectious nature of TB, with treatment failure posing risks for transmission as well as having individual consequences. Additionally, HCW felt that involving patients in decisions would imply that doctors did not know the best course of action, undermining their responsibility and the trust that individuals place in their care.
Many patients described trusting the doctor to decide on their treatment, perceiving the doctor as having their best interests at heart. Practitioner-patient relationships appeared hierarchical, with an asymmetry of knowledge in favour of the doctor, who was seen as the expert and who was deferred to by patients. The power imbued within practitioner-patient relationships is described by Parsons in his conceptualisation of the “sick role”, whereby patients are dependent on medical expertise and authority when facing life-threatening conditions [
21]. Where there is an implicit power imbalance due to knowledge asymmetry, patients take a vulnerable position in relation to HCW, and trust may become particularly important in dynamics affecting engagement with treatment and care [
22]. Trust is said to be essential for effective therapeutic encounters [
23], which becomes heightened in the face of uncertainty, as has been described in the context of cancer treatment decisions [
19,
24]. Additionally, evidence regarding vaccine confidence and engagement finds trust to be a crucial aspect of vaccine decision-making [
22]. The conceptualisation of person-centred care often prioritises shared decision-making [
25], and autonomy is one of the core principles of health care ethics [
26]. However, in our study, trust was pervasive in the accounts of people with MDR-TB, appearing to take precedence over having autonomy for treatment decisions.
While participants stated a preference for the doctor being responsible for treatment decisions, patients described the ways in which they enacted choice regarding the location of their treatment initiation, whether ambulatory or hospital-based. Our findings highlight the importance of giving people with MDR-TB the choice about their preferred treatment location, where possible.
Supporting individuals towards self-management, including through taking ownership of health needs [
27], and involving people in their care more broadly, are key aspects of person-centred care [
6]. In our study, despite health education that is delivered within TB care, knowledge and information about TB and treatment appeared low, with an information gap that people with MDR-TB may fill through seeking information from their peers. The context of low TB knowledge and influence of peer-to-peer information has been described in Uzbekistan [
28,
29]. Additionally, we found that patients could be misinformed, for example about the treatment length, which could potentially undermine their motivation for sustained engagement with treatment. Having more information and understanding relating to MDR-TB and treatment appeared to support individuals having a sense of ownership over their health and treatment-taking, fostering self-responsibility and driving individuals to prioritise treatment-taking over other areas of life and to overcome challenges with treatment-taking. Shock at the time of receiving a difficult diagnosis, such as TB, can make it difficult for individuals to receive and process information at this point [
30]. Being informed and prepared appeared to support engagement with treatment in our study. However, with TB, the treatment decision must be expedited due to transmission concerns, and therefore information and support may need to continue following treatment initiation.
We found that within DOT approaches the locus of control for drug intake appeared to lie with the observing HCW, rather than with the patient, which may undermine people with MDR-TB having sense of ownership and self-responsibility for their health and treatment-taking. DOT forms the centrepiece for treatment delivery and adherence support in many settings, while lacking a rigorous evidence base and reportedly contradicting patient needs and preferences [
6]. HCW had conflicting views about DOT. Most asserted the importance of patients having a sense of responsibility over their treatment, valuing their health and treatment, for enabling their achieving cure, which DOT may contradict through positioning the HCW as responsible for regulation of treatment-taking. However, many HCW had concerns that if they did not “control” patients’ drug intake, there was the risk they would not take treatment as prescribed, and several felt adherence would be worse, even among “adherent patients”, without the presence of DOT. Self-administered treatment for rifampicin-resistant TB in South Africa has been shown to enable integration of treatment-taking into daily life, increasing patients’ autonomy and potentially supporting adherence, among a cohort of clinically stable, adherent patients [
31]. As treatment options become shorter and potentially more tolerable and effective, further research should be conducted into approaches to treatment delivery to ensure that they are person-centred.
Conclusions
Our findings highlight that in this context, people with MDR-TB may prefer to be involved in discussions about their treatment and care, and have their preference sought, rather than having responsibility for the treatment choice itself. This finding appeared to be largely linked to unfamiliarity with the concept of shared decision-making, and the knowledge imbalance within practitioner-patient relationships. Patients felt more comfortable deferring to the expertise of HCWs, who were largely trusted to act in their best interests. People with MDR-TB did appear to enact choice regarding the location of treatment, whether ambulatory or hospital-based, and should be involved in this decision.
We found that involving people in their care, through information, discussion, and clear communication regarding treatment expectations and length, could support the engagement of people with MDR-TB, fostering a sense of ownership and self-responsibility for treatment-taking that could drive continuation. This finding may be particularly important in light of the challenges of taking MDR-TB treatment, driving patients to prioritise treatment over conflicting life demands. Programmes should consider ways in which dialogue and communication between practitioners and patients can be strengthened, so individuals can discuss their preferences, questions and concerns regarding their treatment and care. Additionally, patients having evidence of their treatment need and effect may foster motivation for treatment-taking. This should therefore be emphasised within health messaging and communication of changes in sputum results.
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