Post Tuberculosis Lung Damage (PTLD) - ADAPTS

ADAPTS is an active Post-Tuberculosis Lung Disease (PTLD) patient-led model designed to enhance real-time anti-microbial use (AMU), anti-microbial consumption (AMC), and anti-microbial resistance (AMR)(surveillance, using digital integration of local community and TB (chest) clinic big data.     

Dr. Katanekwa Njekwa a research clinician/fellow at the Center for Infectious Disease Research in Zambia (CIDRZ)- Clinical Trials Unit (CTU)/Tuberculosis (Tb) department.

Globally, approximately 115 million people have contracted TB since its discovery, with an estimated 10 million new cases emerging annually. With increased access to effective treatment, millions of Tb patients have successfully been treated of TB. However, many patients may suffer from post TB sequalae Post TB Lung Disease (PTLD). In Zambia, individuals with PTLD often go undiagnosed and present with recurrent respiratory infections at primary health centers, where they are repeatedly treated with antimicrobials, including repeated treatment with anti-tuberculosis treatment. This overuse of antimicrobials significantly increases the risk of developing drug-resistant TB and other resistant microbes. To tackle this issue, our initiative aims to establish a PTLD long-cohort and the extent of antimicrobial overuse and resistance in this population. Currently, there is a data gap as this information is either not collected or is stored in paper-based formats. Therefore, our goal is to implement a patient-led, trackable, user-friendly database nationwide in the TB (Chest) clinics, with plans to scale it up across other African regions. This database will provide a foundation for future research on PTLD and antimicrobial resistance, enabling the development of locally relevant solutions to combat antimicrobial resistance effectively. 

Our solution seeks to help the millions of TB survivors living with post-TB lung disease (PTLD).  Patients with PTLD have largely remained a neglected population whose recurrent respiratory complaints are often subject to unnecessary and frequent exposure to antimicrobials. Our solution will actively and systematically follow-up patients post Tb treatment. This includes creation of a robust digital database of PTLD long cohort, antimicrobial use, consumption and resistance data. The target audience will be engaged during system development to ensure that data points of concern to them are captured by the developed  tools/platforms. Additionally the solution implementation will be patient-driven antimicrobial prescriptions (self or doctor prescribed) event. Patients will also lead as communities of champions raising awareness on the condition. Community health workers (CHW) will work with patient groups through a community zoning model to facilitate patient tracking and provide local support and linkage to care as needed. CHWs will also be an additional guide to patients in using USSD function for antimicrobial prescription reporting. 

Our solution will highlight the burden of Post-Tuberculosis Lung Disease (PTLD) in Zambia by establishing a long cohort but also enhance appropriate PTLD patient-centered-care (PCC). Our solution will enhance anti-microbial use, consumption and resistance surveillance in PTLD patients. Digitization of the Tb clinics and integrating digital tools to the community (CHWs, Patients) will improve case detection, follow-up, and retention in the Tb patient care spectrum. Using this PTLD patient epidemiological, clinical and laboratory data matrices will be used to develop algorithms for anti-microbial prescription, which in turn will also reduce inappropriate repeated PTB (Pulmonary Tuberculosis) treatment. While actively engaging the community our solution will enhance public awareness of PTLD and assist in reducing stigma. The intentional set-up of digitized anti-microbial pharmacies in the Tb clinic will allow for easy monitoring of anti-microbials prescribed and an incentive for standard of care (SOC) seeking among PTLD patients, increasing the chance of retention in anti-microbial events. Digitization of the TB clinics will foster accessibility of PTLD patients and healthcare providers in remote rural areas to specialized care, a step towards the WHO Universal Health Coverage (UHC).  

Most national Tb programs protocols provide guidance for diagnosis of TB and anti-microbial treatment initiation as well as follow-up until treatment completion, but there is a great lack of follow-up for post tuberculosis lung disease (PTLD). Emerging global evidence suggests that individuals suffering from PTLD experience a poorer quality of life and an increased susceptibility to respiratory tract infections including Tb. These patients may often be mis-diagnosed as TB relapse, inappropriately exposed to anti-microbials and leads to increased mortality. Our solution is a digital active patient-led monitoring of anti-microbial use, consumption and resistance surveillance in PTLD, facilitating extensive evaluation to monitor the frequency of antimicrobial prescriptions and subsequent AMR occurrence and common respiratory pathogens infecting PTLD patients. Data analysis and mapping will enhance patient centered care (PCC) for PTLD patients, reduce TB/PTLD patient stigma, microbial population definition and anti-microbial stewardship  in PTLD patients. The evidence generated will be used to drive policy towards availing preventive and treatment options for patients with PTLD, such as advocacy for smoking cessation, increased awareness of the need for vaccinations such as pneumococcal vaccines, and the availability of pulmonary rehabilitation programs at Tb (chest) Corner. 

Year 1 - Knowledge transfer, collaborations and Set-up 

• Sensitization of the community (patients, healthcare workers and other stakeholders) on post tuberculosis lung disease (PTLD), anti-microbial resistance and digital tools training. Strengthen community trust in digital health technologies. Engage with stakeholders such as the Zambian Ministry of Health (MOH), Tb (chest) clinic staff, patients, mobile network providers etc.

• Explore the already existing data systems. Identification and setting up in the pilot local healthcare facilities. 

Year 2 – Implementation 

• Identification of the PTLD for the long cohort in the anti-microbial use, consumption and resistance surveillance. Create an enabling environment  data-centered collaborations and strengthen existing data ecosystems. 

• Continue to advocate for data infrastructure and analysis. Address TB/PTLD challenges by promoting innovation with the data in the interest of their respective local communities.  

• Create and adopt processes and metrics for monitoring and evaluating the effectiveness of the solutions.  

Year 3 – scale-up  

• Advocate for standards of safety, security, privacy, interoperability, and the ethical use of data within and outside the data ecosystem. 
• Using the data generated to apply for more funding and provide evidence based policy guidance. 
• Expand to other healthcare facilities in the country and pilot sites in other countries. 

We will set up a strategic governance system for promotion, innovation and scale-up of our solution the Post Tuberculosis Lung Damage (PTLD): ADAPTS (Active, Digital, Anti-microbial Patient-Led Treatment Surveillance) through monitoring and evaluation. 

Measures 

• Digital health technology, PTLD, anti-microbial use/consumption/resistance knowledge exchange and learning with stakeholders e.g., Local healthcare facility providers, TB clinic/corner staff, community healthcare workers, Tb/PTLD patients etc. 

• Integration and easy access of PTLD clinical (Spirometry & portable), anti-microbials (digitized proxy pharmacies) and laboratory diagnostic tools in Tb (chest) clinics.

• Capacity building for digital data infrastructure, analysis capabilities and community leadership to address and make informed decisions for anti-microbial use/consumption/resistance surveillance in PTLD patients. 

• Developing tools and processes to curate, standardize and aggregate PTLD anti-microbial use/consumption/resistance data. Advocate for improved data collection, sharing, governance, regulatory and ethical compliance in accordance with national and international standards e.g., SDGs 

• Scale-up of the digital person-centered approach PTLD anti-microbial use/consumption/resistance surveillance to other Tb (chest) clinics in facilities, with integration of data ecosystems within and outside. 

Output  

• Development of an active PTLD patient-led long cohort and a well-structured community level digital anti-microbial use/consumption/resistance surveillance system. 

a. Challenges

Illiteracy and Technophobia 

- High levels of illiteracy among general population. Technophobia among patients, community healthcare worker or clinicians at the Tb clinics. 

Resistance to Change 

-Street level bureaucrats e.g Healthcare worker buy in  

-System and policy level resistance from stakeholders. 

Lack of digital infrastructure 

-Patient medical records still heavily paper-based 

-Existing digital platforms do not capture Tb specific data  

-No biometric data capturing devices 

Stigma 

-Existing stigma towards TB may deter patients willingness to continue in post-TB surveillance activities. 

Limited access to specialists to diagnose and manage PTLD 

lack or limited access to anti-biotics 

b. Mitigation

-These challenges will be addressed at multiple levels tailored sensitization and program specific education paired with health care work trainings on digital health and Tb/PTLD.

-Including our stakeholders in the program development process will ensure buy-in by reassuring safety and privacy of data. 

-Digital infrastructure support  by providing digital tools such as biometric devices, tablets, laptops etc., to Tb (chest) clinics. 

-Tele-link platforms will additionally be utilized for capacity building among clinicians and community healthcare workers linking them to respiratory health experts. Provision of spirometry and portable digital X-ray machines.

-Set-up of digitized proxy anti-microbial pharmacies in Tb (chest) clinics.

The anti-microbial surveillance system is not well described in Zambia and TB has been described as one of the main drivers of anti-microbial resistance. in addition, the post tuberculosis lung disease (PTLD) population has not been fully explored. The Trinity challenge will allow for the identification of PTLD patients in Zambia, through the introduction of active routine spirometry and digital portable chest X-rays for physiological and morphological assessments at the point of treatment completion. Anti-microbial surveillance in this PTLD long cohort will include i.) active scheduled 6 months follow-ups and ii.) unscheduled ‘anti-microbial event’ which is actively initiated by the PTLD patient using the USSD system. The data capturing system in the Tb (clinics) is still paper based with no integrated digital system. Digitization using biometric identification and development of a Tb clinic data ecosystem will enhance PTLD patient tracking, improve tracking/turnaround of laboratory test results and reduce inappropriate exposure to anti-microbials e.g., anti-tuberculosis treatment (ATT) leading to MDR-TB.  Additionally, Tele-link will bring specialist care for patients in remote settings allowing for universal health coverage, the core of the health-related Sustainable Development Goals.  

Our solutions’ success relies on building a community of integrated digital platforms that can help improve health outcomes for PTLD patients and reduce ant-microbial resistance through creation of data systems that can be useful resources for policy decision making. This approach demands collaborative efforts and buy-in from government health and laboratory services, funding agencies, program developers, and the community. Below are a few organizations local and international that we would like to collaborate with: 

Local organizations 

• Tropical Disease Research Center (TDRC)- conducts research and testing in malaria, HIV/AIDS, TB, and many other diseases in Zambia. 

• Development AID from People to People in Zambia (DAPP)- has an extensive community reach in Zambia while working with the CIDRZ community department. 

International organizations and institutions 

• The University of Sheffield, who have advanced data analytic capabilities. 

• IHM Southern Africa-for their electronic health record programs. 

•  Google AI for technical support in system development. 

•  DELL Technologies for big data management.  

• African CDC Antimicrobial Resistance Control, to use their framework to understand priorities in the African context.