Optimizing health systems to improve delivery of decentralized care for patients with drug resistant tuberculosis

Lead Research Organisation: University of Cape Town
Department Name: Health Sciences Faculty


Tuberculosis is a disease of the poor and remains a significant cause of disease and death globally. Our failure to effectively control the TB epidemic has resulted in the emergence of TB bacteria that have become resistant to the main drugs we use in treatment. These drug-resistant bacteria (DR-TB) can then be transmitted to others. In some settings DR-TB has now reached epidemic levels. While treatment is available, it's lengthy, complicated, expensive, and results in poor patient outcomes.

South Africa has a high burden of DR-TB, with more than 26,000 cases reported in 2013. Data suggest that a third of these patients do not have access to appropriate treatment, with only 40% cure for the rest. Fortunately, there are some recent advances that could assist in combatting the DR-TB epidemic. A rapid diagnostic test for DR-TB has been marketed and has now been rolled out across South Africa. This test (Xpert) has increased the number of patients identified and reduced the delay in receiving the diagnostic result. In addition, a new drug for treating DR-TB has just been registered in South Africa. Bedaquiline has the potential to dramatically improve the effectiveness of DR-TB treatment.

However, DR-TB diagnosis and treatment needs to be delivered in the context of the existing health system, the characteristics of which are likely to influence the impact of new interventions. In order to increase access to DR-TB treatment, South Africa moved to a policy of decentralized treatment provision in 2011, i.e., providing DR-TB treatment at lower levels of the health system, with less reliance on hospital treatment. This policy has been variably implemented across different provinces, health districts and settings (i.e., rural versus urban) in South Africa.

In order to maximize the benefit of new interventions, we aim to assess health system factors that enhance or undermine the delivery of treatment for DR-TB, specifically in regard to decentralization of care. We aim to determine what works and why it works, across different settings. Health system factors include such things as: the allocation of appropriate (number and training) human resources, financing at appropriate levels, organizational management, efficient communication and referral systems, sufficient inpatient capacity and access to other services needed for the care of DR-TB patients. These health system factors determine whether individuals with DR-TB disease access care, how long this takes, the quality of care they access, whether they transmit their infection to others and finally whether they have a successful treatment outcome or not. Ultimately, our findings will be used to identify feasible and effective strategies to improve decentralized care for patients with DR-TB in South Africa and other similar settings.

Technical Summary

Diagnosis of drug-resistant tuberculosis (DR-TB, specifically rifampicin-resistance) in South Africa has increased dramatically in recent years with the roll-out of the Xpert MTB/RIF rapid PCR diagnostic test. While more than 26,000 cases were reported in 2013, only 42% of these are reported to have started on second-line treatment and less than 50% of those starting treatment are reported to be successfully treated. In 2011, South Africa instituted a policy of decentralization for DR-TB treatment, in an attempt to move away from lengthy and expensive inpatient treatment and the consequent waiting lists for bed availability and treatment initiation. Given the range of variation in disease burden, population density and health system capacity across South Africa, the policy allowed for different interpretations of decentralized care, with greater or lesser reliance on hospitalization. Preliminary data from an ongoing study suggests that there is a large variation in outcomes among diagnosed DR-TB patients across health districts in South Africa. Considerable diversity in the extent and nature of decentralization was also observed.

In this study we aim to utilize data on patient outcomes (treatment initiation, time to treatment and treatment success) from existing patient cohorts to purposively select a sample of health districts across three provinces in South Africa. Starting from the national level, through to the provinces and subsequently districts, we then aim to conduct a realist study to identify features of decentralized care and health system factors that are associated with positive patient pathways to care and outcomes. We aim to understand the mechanisms underlying what works and why it works in terms of decentralized DR-TB care, in particular settings and contexts. In collaboration with policy makers and health authorities, we will then identify strategies for short and medium-term improvements in the delivery of decentralized care for DR-TB.

Planned Impact

We recognize that gaps exist between recommendation, policy change and successful implementation of revised policies. We will therefore focus on developing very specific recommendations that target short, medium and longer-term change. Our experience from our previous work, described below, leads us to believe that there are 'low hanging fruit', which are amenable to intervention, e.g. simple improvements in the prompt delivery of laboratory results to clinicians at primary care level are likely to increase access to treatment in the short term. Medium term improvements might result from improved access to specific DR-TB training for health care workers at primary care level, while longer term improvements might result from the implementation of more complex referral pathways for patients requiring more specialised care than can be provided at the primary care level.

This research aims to improve the ability of health systems (and in particular the South African health system) to effectively treat diagnosed DR-TB cases. Therefore, the beneficiaries of this research will be:
1) Rural and urban patients with DR-TB with varied access to appropriate and timely services;
2) Local managers and health workers tasked with implementing DR-TB decentralized care.
3) Policy makers (both provincial and national level) within the National Department of Health and in similar settings globally.

DR-TB Patients will benefit from improved health systems that more effectively deliver care for DR-TB. Specifically, we will develop recommendations to improve linkage to appropriate care following diagnosis, to support the roll out of decentralized care (closer to the patient's home) and to retain patients in care. Ultimately, we hope that this will lead to improved quality of life and reduced morbidity and mortality amongst DR-TB patients.

Local managers and health workers tasked with implementing decentralized care for DR-TB cases will benefit through the identification of interventions (e.g., training, supportive supervision, performance management, etc.) that can support and enhance their capacity to deliver decentralized care, by maximising the use of resources, evidence and skills available to them.

Policy makers within the South African health services will benefit from evidence-based recommendations on how to best organize the health services for DR-TB. This will include a clear description of optimal interventions for decentralization in different contexts, identification of strategies that represent best practice, and guidelines on how to support local health systems to maximize the potential benefit of new interventions for DR-TB (such as new diagnostics and models of care). The recommendations will also address the need and mechanisms to improve health information systems for DR-TB. Whilst these recommendations will be based within the South African context, it is anticipated that they will also be useful for policy makers in other low and middle income countries with a high burden of DR-TB.
Additionally, research staff trained in this approach as part of this study will be able to contribute more broadly to the development of an evidence-based approach to health policy and implementation in South Africa.

We also aim to utilize data from the patient cohorts and findings from this study to inform and populate mathematical models, aimed at addressing key questions in the health system response to DR-TB. For example, while access to centralised, specialist care might result in improved outcomes for the individuals able to access such care, more widespread access to treatment through decentralization might result in somewhat reduced quality of care for individuals, but treatment success for a greater proportion of diagnosed patients. Policy decisions need to weigh up these key trade-offs; mathematical models assessing future impacts on DR-TB transmission of different approaches could inform such decisions.


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Title ArtWork: World TB Day Awareness 
Description Primary school learners were tasked to create oil on canvas artworks around themes of TB prevention and/or inspiring hope for persons with TB illness for displays on World TB day at the local library, medical school and TB facilities in the province. 
Type Of Art Artwork 
Year Produced 2019 
Impact Primary school learners increased awareness and insights into TB. Eye catching media are being created for medical student awareness. Messages of hope in the form of child art works will be provided to TB facilities. 
Title Drug Resistant TB hospital ward artwork project 
Description The research team mentored 2nd year MBChB students seeking to obtain a greater understanding of patients infected with DR-TB and wishing to give something back to those people spending time in health care facilities in SA. Students created artworks for donation to DR-TB facilities which were distributed during fieldwork efforts to the study sites. Messages of encouragement were incorporated by the students into the canvas artpieces. 
Type Of Art Artwork 
Year Produced 2018 
Impact Staff and patient appreciation of student efforts and encouragement, awareness amongst medical students of the plight of DR-TB patients. 
Title Medical student 3rd year short study module: Info-graphics & artwork research day exhibition 
Description 1 x Info-graphic on patient centered DR-TB care was created by a 3rd year medical student. 1 x original artwork on patient centered DR-TB care was created a 3rd year medical student. 
Type Of Art Artistic/Creative Exhibition 
Year Produced 2019 
Impact Increased awareness among junior medical staff and students as to the study, study researchers and the DR-TB & health system related findings. Utilisation of the info-graphic outputs on optimising access and providing patient-centered care for DR-TB in hospital and medical school notice-boards. Increased student awareness of the study project and the project findings and related messages. 
Title OPTIM-MDR-TB: DR-TB models of care & facility details project source document. 
Description The composition consisted of health facility photographs, aerial photographs, regional maps, pictorial diagrams of referral models and reference tables in order to give investigators and support staff source material and coal face insights from the research field. 
Type Of Art Composition/Score 
Year Produced 2018 
Impact This source document has been utilised by the investigators in the compilation of papers for publication and also formed a source of reference material for discussions & meetings. 
Description We conducted policy review and key informant interviews to understand the emergence and implications of the national policy for decentralization of drug-resistant tuberculosis (DR-TB) management in South Africa. We identified tensions between actors favouring "control-based" isolation of patients with emphasis on centralisation and control of patient treatment and resources, and those favouring "access-based" approaches that emphasised decentralised, patient centred care. Centralised, specialised DR-TB approaches were perceived to protect quality of care, but compromised patient-centred care and human rights, and restricted access to DR-TB treatment. 'Policy entrepreneurs' used lessons from pilot studies of DR-TB decentralisation and HIV programmes to overcome policy stagnation.
Seven years after South Africa implemented policy to decentralise drug-resistant TB care, little is known about the extent of decentralisation and how this has impacted on patient pathways to care. We used a novel method for tracking patient pathways through the health care system, using a combination of laboratory records, folder review, facility interviews and geographic-information systems to characterize the emerging patient movement patterns and diverse models of care during treatment. Individual patient pathway pattern analysis can assist health services to understand models of care in their setting and plan the transition towards increasingly decentralized, patient-centered care for chronic illness.
Patient-centred care, care that considers the needs and circumstances of individual patients, is one of the three pillars of the WHO End TB strategy. While South Africa has a policy of decentralised care for DR-TB that aims to deliver treatment closer to patients' residences, healthcare remains poorly responsive to the social, economic, and psychological needs of patients. We described the complex medical, social, economic and geographic profiles of DR-TB patients in order to better understand these needs. Patients experienced complex medical challenges (including advanced HIV co-infection and chronic illness) and social challenges (including mental illness, incarceration, substance abuse), which belie a one-size-fits-all model of care. Within a decentralized model, service delivery needs to be differentiated in order to better address specific needs and vulnerabilities of individual patients.
The role of clinical health care champions driving drug-resistant tuberculosis policy implementation in South Africa was identified. It was observed that champions drive policy implementation and overcome barriers in resource-constrained environments. They should receive support from their organisational networks, if they are to compensate for the gaps in the healthcare system.
After conducting a realist evaluation of a large-scale health system intervention designed to improve access to care for patients with drug-resistant tuberculosis in South Africa, we produced a theory of decentralisation. Termed the 'sweet spot' theory of decentralisation, we postulate that the ideal point of care delivery is a sweet spot along the spectrum of decentralisation, as close as possible to a patient's home, with the right level of capacity to provide personalised clinically-appropriate DR-TB care, determined by a delicate balance of clinical, system, personal and social factors, presented as dials, that define a patient-centred perspective to quality of care for DR-TB patients, in order to meet personal and social needs of patients without compromising standard of clinical care.
Exploitation Route Academic outcomes: Several manuscripts describing the main outcomes of this work are currently in preparation, in addition this work will be presented at national and international meetings in the fields of health systems research broadly and tuberculosis specifically. Two researchers will achieve doctoral degrees and one student has completed a master's degree through nested work and support from the project. Sixteen undergraduate medical students were involved in short research projects on focus areas of the study. The national policy maker is adopting outputs of the work to implement health systems strengthening aspects of the South African DR-TB programme.

Non-academic outcomes: A key pathway to impact is through engagement with the South African National and Provincial Departments of Health. This process of engagement is well underway, with ongoing interaction through presentations at stakeholder meetings and personal engagement with the National Director for drug-resistant TB. We are currently exploring additional opportunities to extend this impact, through collaboration with NGOs responsible for supporting implementation of decentralized care for DR-TB and development of material, targeted at programme managers at all levels, describing our findings in relation to mechanisms which facilitate or impede successful decentralization of care
Sectors Healthcare

Description DR-TB National Ministry of Health engagement: Recognizing geographic variation in decentralised care for drug-resistant TB care in SA.
Geographic Reach Africa 
Policy Influence Type Participation in a national consultation
Impact Our group presented findings to the National Director for Drug-Resistant TB. We assisted in Identifying districts where suboptimal decentralised patterns of care were identified . This assisted the directorate to identify areas requiring health system strengthening to improved decentralised care for drug-resistant TB patients.
Description Data providing input into the springboard / pilot study towards the PhD proposal creation of the DR-TB national health minister.
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact Data providing input into the springboard / pilot study towards the PhD proposal creation of the DR-TB national health minister.
Description Definition of geospatial pathway patterns and health care models of decentralised care for DR-TB in SA
Geographic Reach National 
Policy Influence Type Gave evidence to a government review
Impact Following the call to decentralise DR-TB services in SA in 2009, 5 distinct geospatial health system patterns have emerged. Two of these patterns have significant PHC involvement in the patient care pathway and one involves a high degree of flexibility at a wide spectrum of care levels. Ill patients and those with significant socioeconomic challenges were most likely to experience longer inpatient stays in the two traditional patterns, compared to the three more yielding patterns. The reason for this is due to lower degrees of flexibility and fewer care level options in the traditional (hub & spoke and chicken-foot) patters. Involvement of a greater number and spectrum of different levels of facilities and networks in managing DR-TB creates capacity for the system to provide a greater range of care and referral flexibility within districts. Discovery of significant spatio-temporal movement patterns of patients enable health managers to better understand the dominant pathway and referral patterns in their regions.
Title Using patient pathways to map models of care. 
Description Our group used laboratory information systems to track patients under care for drug-resistant TB through the health system. Using this novel method, we were able to identify actual patterns of decentralised DR-TB care and translate these into generic models This method can be used by other researchers to better understand actual patient movements through the health system, to identify and interrogate underlying models of care. 
Type Of Material Model of mechanisms or symptoms - human 
Year Produced 2020 
Provided To Others? Yes  
Impact None identified to date. 
Title DR-TB patient routine laboratory data 
Description We compiled a dataset comprising all laboratory data for 180 randomly selected, newly diagnosed drug-resistant TB patients per province for 3 provinces (12 districts) across South Africa. Laboratory tests, the dates conducted, results obtained and location thereof and the associated facility details are contained in the dataset. This dataset will be of value to track patient movements across the health system and describe patterns of care for patients with DR-TB. 
Type Of Material Database/Collection of data 
Year Produced 2017 
Provided To Others? No  
Impact Patients can be randomly sampled and pathways can begin to be mapped through the patient journey through the health care system. This forms the basis for researcher facility visits and verification of the patient journey through the health system. This is a novel approach to mapping patient care pathways. We have subsequently validated this dataset by visits to health facilities. 
Title Optimising GIS matching & identification of Health Care facilities in SA 
Description We compiled a comprehensive database of health facilities visited by patients with drug-resistant TB in South Africa, including GIS mapping of these facilities. A systematic approach was undertaken to utilise several different GIS resources that were used to plot health facilities in SA, by different agencies or groups both formally and informally. From this process 15 487 health facility records were identified, including 15 058 sets of GPS coordinates. Amongst all data sources, 933 exact duplicates by facility name and GPS coordinates and 3759 duplicate sets of GPS coordinates were found. A final set of facilities and associated coordinates was compiled. 
Type Of Material Database/Collection of data 
Year Produced 2018 
Provided To Others? No  
Impact This work is currently being shared and tested against work undertaken by others in the modelling & GIS fields. It will be made available once this process is completed. 
Description Disconnect between Policy and Funding: A Case Study of Drug-Resistant TB Financing in South Africa 
Organisation University of the Western Cape
Country South Africa 
Sector Academic/University 
PI Contribution Our investigator team supported the work of this collaborator, through facilitating interviews with key stakeholders, and through review of findings and draft manuscripts.
Collaborator Contribution Our partner contributed to analysis of key informant interviews which formed part of our project.
Impact PhD output and study paper. Multidisciplinary: Health economics
Start Year 2018
Description National drug-resistant-TB department of health patient pathway patterns & models of decentralised care optimisation project. 
Organisation Government of South Africa
Department Department of Health
Country South Africa 
Sector Public 
PI Contribution Our research team presented findings at National Department of Health drug resistant-TB key stakeholder workshop in October 2019 and then again in March 2020. Dr. Ndjeka (head of drug resistant TB, National Department of Health) was involved in incorporating our project findings into stakeholder recommendations. This is an ongoing partnership to translate our research findings into policy and strategy at the National Department of Health, TB Directorate.
Collaborator Contribution Dr Ndjeka, National Department of Health, TB Directorate, has engaged with our research team to provide context and feedback on our study findings.
Impact OPTIM-MDR TB investigators presented our findings at two National Department of Health TB Directorate quarterly meetings, in order to assist with practical incorporation of research findings from this study.
Start Year 2018
Description What "patient-centred care" means to people living with drug-resistant tuberculosis in South Africa: a qualitative study on quality of care and decentralization of service provision 
Organisation Harvard University
Department Harvard Medical School
Country United States 
Sector Academic/University 
PI Contribution We have leveraged our research work on this MRC award to conduct a nested study on patient perceptions of care. This will allow us to more fully explore the meaning of patient centred care, from both the perspective of the health system as well as the patient experience.
Collaborator Contribution In kind contribution of time from Dr Jennifer Furin as well as in kind contribution of time from Dr Helen Cox.
Impact Paper publication has resulted. Multidisciplinary: Epidemiology, Medicine, Education, Microbiology
Start Year 2018
Title DR-TB 'sweet spot machine' concept model: This determines the ideal location / site for an individual / group to receive the ideal degree of decentralised of DR-TB care. 
Description Currently being compiled for publication as a paper and has been prresented and favorably received by the SA NDOH for incorporation into current decentralisation of DR-TB efforts. 
Type Management of Diseases and Conditions
Current Stage Of Development Refinement. Non-clinical
Year Development Stage Completed 2020
Development Status Actively seeking support
Impact Increased relationship and recognition of group with SA NDOH in line with DR-TB efforts. 
Description DR-TB health care provider feedback sessions at rural & satellite decentralised sites 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Feedback sessions were held at Zithulele Hospital (Rural E Cape), Don McKenzie Hospital (Urban KwaZulu-Natal), Sonstraal Hospital (Rural W Cape) and Velsdrift Correctional Services hospital to feed back early research findings regarding patient pathways, characteristics and experiences, in relation to their facilities. This was followed by discussion which provided further insights for the research team but also provided opportunity to share experiences and learning opportunities across sites, particularly around issues such as technical communication, patient referral, record keeping and morale.
Year(s) Of Engagement Activity 2018
Description Key Informant interviews with stakeholders at national and provincial levels regarding the national policy for decentralization of DR-TB services in SA. 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Key informant interviews (KII) were conducted with stakeholders at national and provincial levels to explore their understanding of the national policy for decentralization and how this has been implemented in their setting. Interviews also addressed the context and evolution of the policy, challenges to its implementation and innovative strategies to overcome these challenges. Five categories of KI were interviewed, namely policy-makers, scientific experts, senior implementing staff, supervisory and reporting staff and Non-Governmental Organisation staff. Purposive sampling was used, directed by a database that included the names and locations of key positions involved in DR-TB care from the previous Linkage to Care study, with emphasis on the role and position of policy-makers in the DR-TB care system.
Year(s) Of Engagement Activity 2016,2017
Description Medical student 2nd year short study curriculum module (SSM) - Engaging medical students in literature studies and discussions with team members. 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Undergraduate students
Results and Impact Each year, the 2nd year UCT MBChB curriculum requires study projects and supervision for medical students. Four UCT students were provided with literature study projects aligned to the study objectives of this study, in order to engage with undergraduate students and increase awareness amongst emerging health care professionals. The students were subsequently hosted and supervised in these literature reviews by the local study team members during July-Aug 2016 and 2017. Significant discussion and interest was generated by the students during these periods.
Year(s) Of Engagement Activity 2016,2017
Description National Department of Health Stakeholder workshop: Decentralisation efforts / plans to optimise DR-TB care in South Africa 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Our research group was invited to engage with policy makers, health managers and practitioners with regards to the findings of the study at a meeting of the TB Directorate, National Department of Health, in order to assist provincial TB control programmes to better understand patterns of care for drug-resistant TB in their provinces. In addition we provided informal mentorship to provincial directorates, to assist the development of optimal decentralisation efforts in their regions.
Year(s) Of Engagement Activity 2019
Description Patient & patient family engagements & interviews in rural Eastern Cape, rural Western Cape and rural KwaZulu-Natal 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Family members and patients were interviewed in groups in their homesteads in order to gain insights into their experiences as sufferers and supporters of patients with DR-TB. This generated an opportunity for story telling, debriefing, questions and discussion. There was also opportunity for education around common misconceptions related to DR-TB.
Year(s) Of Engagement Activity 2018