Journal Article > ResearchFull Text
PLOS One. 24 September 2014; Volume 9 (Issue 9); DOI:10.1371/journal.pone.0108591
Horter SCB, Stringer B, Venis S, du Cros PAK
PLOS One. 24 September 2014; Volume 9 (Issue 9); DOI:10.1371/journal.pone.0108591
In 2011, Médecins Sans Frontières (MSF) established a blogging project, "TB&Me," to enable patients with multidrug-resistant tuberculosis (MDR-TB) to share their experiences. By September 2012, 13 MDR-TB patients had blogged, either directly or with assistance, from the UK, Australia, Philippines, Swaziland, Central African Republic, Uganda, South Africa, India, and Armenia. Due to the lack of research on the potential for social media to support MDR-TB treatment and the innovative nature of the blog, we decided to conduct a qualitative study to examine patient and staff experiences. Our aim was to identify potential risks and benefits associated with blogging to enable us to determine whether social media had a role to play in supporting patients with MDR-TB.
Journal Article > ResearchFull Text
Trials. 4 December 2021; Volume 22; 881 .; DOI:10.1186/s13063-021-05850-0
Wharton-Smith A, Horter SCB, Douch E, Gray NSB, James N, et al.
Trials. 4 December 2021; Volume 22; 881 .; DOI:10.1186/s13063-021-05850-0
BACKGROUND
Addressing the global burden of multidrug-resistant tuberculosis (MDR-TB) requires identification of shorter, less toxic treatment regimens. Médecins Sans Frontières (MSF) is currently conducting a phase II/III randomised controlled clinical trial, to find more effective, shorter and tolerable treatments for people with MDR-TB. Recruitment to the trial in Uzbekistan has been slower than expected; we aimed to study patient and health worker experiences of the trial, examining potential factors perceived to impede and facilitate trial recruitment, as well as general perceptions of clinical research in this context.
METHODS
We conducted a qualitative study using maximum variation, purposive sampling of participants. We carried out in-depth interviews (IDIs) and focus group discussions (FGDs) guided by semi-structured topic guides. In December 2019 and January 2020, 26 interviews were conducted with patients, Ministry of Health (MoH) and MSF staff and trial health workers, to explore challenges and barriers to patient recruitment as well as perceptions of the trial and research in general. Preliminary findings from the interviews informed three subsequent focus group discussions held with patients, nurses and counsellors. Focus groups adopted a person-centred design, brainstorming potential solutions to problems and barriers. Interviews and FGDs were audio recorded, translated and transcribed verbatim. Thematic analysis, drawing on constant comparison, was used to analyse the data.
RESULTS
Health system contexts may compete with new approaches especially when legislative health regulations or policy around treatment is ingrained in staff beliefs, perceptions and practice, which can undermine clinical trial recruitment. Trust plays a significant role in how patients engage with the trial. Decision-making processes are dynamic and associated with relationship to diagnosis, assimilation of information, previous knowledge or experience and influence of peers and close relations.
CONCLUSIONS
This qualitative analysis highlights ways in which insights developed together with patients and healthcare workers might inform approaches towards improved recruitment into trials, with the overall objective of delivering evidence for better treatments.
Addressing the global burden of multidrug-resistant tuberculosis (MDR-TB) requires identification of shorter, less toxic treatment regimens. Médecins Sans Frontières (MSF) is currently conducting a phase II/III randomised controlled clinical trial, to find more effective, shorter and tolerable treatments for people with MDR-TB. Recruitment to the trial in Uzbekistan has been slower than expected; we aimed to study patient and health worker experiences of the trial, examining potential factors perceived to impede and facilitate trial recruitment, as well as general perceptions of clinical research in this context.
METHODS
We conducted a qualitative study using maximum variation, purposive sampling of participants. We carried out in-depth interviews (IDIs) and focus group discussions (FGDs) guided by semi-structured topic guides. In December 2019 and January 2020, 26 interviews were conducted with patients, Ministry of Health (MoH) and MSF staff and trial health workers, to explore challenges and barriers to patient recruitment as well as perceptions of the trial and research in general. Preliminary findings from the interviews informed three subsequent focus group discussions held with patients, nurses and counsellors. Focus groups adopted a person-centred design, brainstorming potential solutions to problems and barriers. Interviews and FGDs were audio recorded, translated and transcribed verbatim. Thematic analysis, drawing on constant comparison, was used to analyse the data.
RESULTS
Health system contexts may compete with new approaches especially when legislative health regulations or policy around treatment is ingrained in staff beliefs, perceptions and practice, which can undermine clinical trial recruitment. Trust plays a significant role in how patients engage with the trial. Decision-making processes are dynamic and associated with relationship to diagnosis, assimilation of information, previous knowledge or experience and influence of peers and close relations.
CONCLUSIONS
This qualitative analysis highlights ways in which insights developed together with patients and healthcare workers might inform approaches towards improved recruitment into trials, with the overall objective of delivering evidence for better treatments.
Journal Article > ResearchFull Text
BMC Infect Dis. 16 September 2020; Volume 20 (Issue 1); DOI:10.1186/s12879-020-05407-7
Horter SCB, Stringer B, Gray NSB, Parpieva N, Safaev K, et al.
BMC Infect Dis. 16 September 2020; Volume 20 (Issue 1); DOI:10.1186/s12879-020-05407-7
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.
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.
Conference Material > Slide Presentation
Horter SCB
MSF Scientific Days International 2020: Research. 13 May 2020; DOI:10.7490/f1000research.1117904.1
Conference Material > Video
Horter SCB
MSF Scientific Days International 2020: Research. 13 May 2020
Conference Material > Abstract
Horter SCB, Stringer B, Gray NSB, Parpieva N, Tigay Z, et al.
MSF Scientific Days International 2020: Research. 20 May 2020
INTRODUCTION
Person-centred care (PCC) is an internationally recognised priority, and a key underlying principle within MSF projects. PCC ensures that people are involved in their care and treatment decisions, and considers individuals' needs and priorities within service delivery. Clarity is required regarding how this may be implemented within different contexts. Multidrug-resistant tuberculosis (MDR-TB) treatment is lengthy, toxic and insufficiently effective, with recent developments changing the treatment landscape. WHO’s 2019 treatment guidelines include a shorter, 9-11 month-long treatment regimen, and recommends that people with MDR-TB should be involved in the decision around treatment option. We examine what PCC can look like in practice, through the perspectives and experiences of people with MDR-TB and health care workers (HCW) in Karakalpakstan, Uzbekistan.
METHODS
We carried out a qualitative study, comprising 48 interviews with people with MDR-TB (n=24; including repeat interviews with three participants) and healthcare workers (n=20), in Karakalpakstan in June-July 2019. In this setting, MSF and the Ministry of Health collaboratively have provided TB care since 1998. 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 (QSR International, Melbourne, Australia).
ETHICS
This study was approved by the ethics committees of Uzbekistan and the MSF Ethics Review Board.
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 to them to choose the appropriate treatment. HCW distrusted the effectiveness and appropriateness of the shorter treatment regimen, which may influence who is offered this option. Additionally, HCW had concerns about involving people in treatment choices, preferring that the doctor decide. However, people with MDR-TB wanted to be involved in discussions about their treatment, to have their preference sought, and were comfortable choosing the treatment location, whether ambulatory or hospital-based. Participants felt it important that people with MDR-TB have increased knowledge and understanding about their treatment and disease, to foster their sense of preparedness and ownership of treatment. Involving people in their care was said to motivate sustained treatment-taking, which some felt directly observed treatment (DOT) delivery could undermine.
CONCLUSIONS
There was a preference for doctors choosing the treatment regimen, linked to unfamiliarity with shared decision-making and an imbalance between the perceived knowledge base of practitioners and patients. Involving people in their care, through discussions, information, and preference seeking could foster better ownership and self-responsibility, supporting sustained engagement with treatment, which DOT may contradict. These findings are important with MSF operations working to achieve PCC in practice, highlighting the need for approaches that are context specific and adapted to individuals’ preferences. Programmes should consider more person-centred approaches to treatment delivery, such as community or family DOT.
CONFLICTS OF INTEREST
None declared
Person-centred care (PCC) is an internationally recognised priority, and a key underlying principle within MSF projects. PCC ensures that people are involved in their care and treatment decisions, and considers individuals' needs and priorities within service delivery. Clarity is required regarding how this may be implemented within different contexts. Multidrug-resistant tuberculosis (MDR-TB) treatment is lengthy, toxic and insufficiently effective, with recent developments changing the treatment landscape. WHO’s 2019 treatment guidelines include a shorter, 9-11 month-long treatment regimen, and recommends that people with MDR-TB should be involved in the decision around treatment option. We examine what PCC can look like in practice, through the perspectives and experiences of people with MDR-TB and health care workers (HCW) in Karakalpakstan, Uzbekistan.
METHODS
We carried out a qualitative study, comprising 48 interviews with people with MDR-TB (n=24; including repeat interviews with three participants) and healthcare workers (n=20), in Karakalpakstan in June-July 2019. In this setting, MSF and the Ministry of Health collaboratively have provided TB care since 1998. 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 (QSR International, Melbourne, Australia).
ETHICS
This study was approved by the ethics committees of Uzbekistan and the MSF Ethics Review Board.
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 to them to choose the appropriate treatment. HCW distrusted the effectiveness and appropriateness of the shorter treatment regimen, which may influence who is offered this option. Additionally, HCW had concerns about involving people in treatment choices, preferring that the doctor decide. However, people with MDR-TB wanted to be involved in discussions about their treatment, to have their preference sought, and were comfortable choosing the treatment location, whether ambulatory or hospital-based. Participants felt it important that people with MDR-TB have increased knowledge and understanding about their treatment and disease, to foster their sense of preparedness and ownership of treatment. Involving people in their care was said to motivate sustained treatment-taking, which some felt directly observed treatment (DOT) delivery could undermine.
CONCLUSIONS
There was a preference for doctors choosing the treatment regimen, linked to unfamiliarity with shared decision-making and an imbalance between the perceived knowledge base of practitioners and patients. Involving people in their care, through discussions, information, and preference seeking could foster better ownership and self-responsibility, supporting sustained engagement with treatment, which DOT may contradict. These findings are important with MSF operations working to achieve PCC in practice, highlighting the need for approaches that are context specific and adapted to individuals’ preferences. Programmes should consider more person-centred approaches to treatment delivery, such as community or family DOT.
CONFLICTS OF INTEREST
None declared
Journal Article > ResearchFull Text
Med Anthropol. 20 February 2020; Volume 39 (Issue 8); 675-688.; DOI:10.1080/01459740.2020.1720981
Horter SCB, Seeley J, Bernays S, Kerschberger B, Lukhele N, et al.
Med Anthropol. 20 February 2020; Volume 39 (Issue 8); 675-688.; DOI:10.1080/01459740.2020.1720981
Treat-all recommends prompt treatment initiation for those diagnosed HIV positive, requiring adaptations to individuals' behavior and practice. Drawing on data from a longitudinal qualitative study in Eswatini, we examine the choice to initiate treatment when asymptomatic, the dissonance between the biomedical logic surrounding Treat-all and individuals' conceptions of treatment necessity, and the navigation over time of ongoing engagement with care. We reflect on the perspectives of healthcare workers, responsible for implementing Treat-all and holding a duty of care for their patients. We explore how the potentially differing needs and priorities of individuals and the public health agenda are navigated and reconciled. Rationalities regarding treatment-taking extend beyond the biomedical realm, requiring adjustments to sense of self and identity, and decision-making that is situated and socially embedded. Sense of choice and ownership for this process is important for individuals' engagement with treatment and care.
Journal Article > ResearchFull Text
BMC Health Serv Res. 21 February 2014; Volume 14 (Issue 1); DOI:10.1186/1472-6963-14-81
Horter SCB, Stringer B, Reynolds L, Shoaib M, Kasozi S, et al.
BMC Health Serv Res. 21 February 2014; Volume 14 (Issue 1); DOI:10.1186/1472-6963-14-81
Ambulatory, community-based care for multi-drug resistant tuberculosis (MDR-TB) has been found to be effective in multiple settings with high cure rates. However, little is known about patient preferences around models of MDR-TB care. Medecins Sans Frontieres (MSF) has delivered home-based MDR-TB treatment in the rural Kitgum and Lamwo districts of northern Uganda since 2009 in collaboration with the Ministry of Health and the National TB and Leprosy Programme. We conducted a qualitative study examining the experience of patients and key stakeholders of home-based MDR-TB treatment.
Protocol > Research Protocol
Horter SCB
1 September 2014
Journal Article > ResearchFull Text
PLOS One. 25 November 2020; Volume 15; DOI:10.1371/journal.pone.0242359
Horter SCB, Achar J, Gray NSB, Parpieva N, Tigay Z, et al.
PLOS One. 25 November 2020; Volume 15; DOI:10.1371/journal.pone.0242359
Introduction
Standard multidrug-resistant tuberculosis (MDR-TB) treatment is lengthy, toxic, and insufficiently effective. New drugs and a shorter treatment regimen (SCR) are now recommended. However, patient and health-care worker (HCW) perspectives regarding the SCR are unknown. We aimed to determine the views and experiences of patients with MDR-TB and HCW regarding the SCR in Karakalpakstan, Uzbekistan.
Methods
In a qualitative study, we conducted 48 in-depth interviews with 24 people with MDR-TB and 20 HCW, purposively recruited to include those with a range of treatment-taking experiences and employment positions. Data were analysed thematically using Nvivo 12, to identify emergent patterns, concepts, and categories. Principles of grounded theory were drawn upon to generate findings inductively from participants’ accounts.
Results
All patients viewed the SCR favourably. The SCR was seen as enabling an expedited return to work, studies, and “normality”. This reduced the burden of treatment and difficulties with treatment fatigue. The SCR appeared to improve mental health, ease difficulties with TB-related stigma, and foster improved adherence. While patients wanted shorter treatment, it was also important that treatment be tolerable and effective. However, HCW doubted the appropriateness and effectiveness of the SCR, which influenced their confidence in prescribing the regimen.
Conclusion
The SCR was said to benefit treatment completion and patients’ lives. HCW concerns about SCR appropriateness and effectiveness may influence who receives the regimen. These are important considerations for SCR implementation and MDR-TB treatment developments, and dissonance between patient and HCW perspectives must be addressed for successful implementation of shorter regimens in the future.
Standard multidrug-resistant tuberculosis (MDR-TB) treatment is lengthy, toxic, and insufficiently effective. New drugs and a shorter treatment regimen (SCR) are now recommended. However, patient and health-care worker (HCW) perspectives regarding the SCR are unknown. We aimed to determine the views and experiences of patients with MDR-TB and HCW regarding the SCR in Karakalpakstan, Uzbekistan.
Methods
In a qualitative study, we conducted 48 in-depth interviews with 24 people with MDR-TB and 20 HCW, purposively recruited to include those with a range of treatment-taking experiences and employment positions. Data were analysed thematically using Nvivo 12, to identify emergent patterns, concepts, and categories. Principles of grounded theory were drawn upon to generate findings inductively from participants’ accounts.
Results
All patients viewed the SCR favourably. The SCR was seen as enabling an expedited return to work, studies, and “normality”. This reduced the burden of treatment and difficulties with treatment fatigue. The SCR appeared to improve mental health, ease difficulties with TB-related stigma, and foster improved adherence. While patients wanted shorter treatment, it was also important that treatment be tolerable and effective. However, HCW doubted the appropriateness and effectiveness of the SCR, which influenced their confidence in prescribing the regimen.
Conclusion
The SCR was said to benefit treatment completion and patients’ lives. HCW concerns about SCR appropriateness and effectiveness may influence who receives the regimen. These are important considerations for SCR implementation and MDR-TB treatment developments, and dissonance between patient and HCW perspectives must be addressed for successful implementation of shorter regimens in the future.