Low-cost Lung Rehabilitation Program for Post TB Lung Disease patients

Paradiso TB Patient Trust

Tuberculosis (TB) remains a significant Global Health challenge, affecting millions of individuals each year. Malawi is among the high TB-HIV burden countries. The TB treatment success rate is 90%, despite this, evidence indicates that TB survivors face physical, psychosocial, and economic challenges post-treatment. In Malawi conduct an operational study which had indicated that 67% (N=1,160) of the post-TB patients presented impairments in their lives; the majority (59%, N=616) were affected mostly by lung impairment, resulting in activity limitations and a lower quality of life. 

Concerning income, the analysis showed that 59% of the TB survivors were negatively affected by post-TB disabilities, while 49% said it affected their social life. Notably, through our implementation research, 73% of post-TB survivors were living on less than a dollar after TB, compared to 49% before TB diagnosis. Furthermore, unemployment rates increased from 8% before TB treatment to 20% post-TB diagnosis, with a significant rise from 7.3% to 18.3% after TB treatment. This is due to the TB survivors limited function.

The lack of Routine Post TB Lung Disease Screening in TB survivors. This addresses the absence of systematic and routine screening protocols. Many healthcare systems do not have standardized procedures for identifying PTLD in TB survivors, leading to late diagnosis and treatment. This gap results in many patients suffering from untreated complications.

There is a significant shortage of trained healthcare personnel specializing in PTLD, particularly in rural and underserved areas. While physiotherapists can provide general rehabilitation, they are often only present at district and tertiary levels and do not specialize in lung rehabilitation. Our model aims to equip healthcare workers at the community level with the skills necessary for specialized lung rehabilitation, where the need is often the greatest.

Many TB survivors live in remote or rural areas where healthcare facilities are far between. The distance to access specialized services often means that patients have to travel long distances, which can be both time-consuming and costly. This geographic barrier discourages many from seeking the necessary follow-up care, leading to untreated or poorly managed PTLD.

There is a general lack of awareness about PTLD among both healthcare workers and TB survivors. Many healthcare workers are not adequately trained to recognize and manage PTLD, resulting in missed diagnoses and suboptimal care. Similarly, TB survivors may not be aware of the potential long-term complications of TB and the importance of ongoing screening and rehabilitation, leading to a lack of self-advocacy and proactive health management.

A low-cost lung rehabilitation program has been developed at the primary and Community health care level to rejuvenate TB survivors both psychologically and physically through resistance and aerobic exercises. This program ensures that PTLD patients receive medical help and a long-term commitment to exercise, increasing muscle strength, lung capacity, endurance, and mobility while reducing pain and mental health issues. Additionally, it aims to increase knowledge and awareness of lung conditions and promote self-management.

The program consists of sessions conducted twice a week for 12 weeks, featuring group physical exercises arranged in a circuit mode with various stations. The intensity of the exercises is tailored to each participant’s abilities, based on their one-repetition maximum (1RM), type, and degree of impairment determined during baseline assessments. Each session includes 10 minutes of health education, a 10-minute warm-up, 30 minutes of exercises, and a 5-minute cool down, totaling 55 minutes per session.

During the 10-minute health education, clients are educated on TB disease, symptoms, rights and responsibilities of TB patients, and other related topics including stigma. They are encouraged to eat balanced meals whenever possible, with an emphasis on the six food groups. Clients are taught how to consume the recommended food groups using readily available foodstuffs in their communities. Group therapy and a circuit training approach are used to deliver the exercise therapy, with a one-to-one approach employed where necessary.

Circuit training involves setting different stations of exercise training. At each station, a set of exercise activities is described in advance and relevant exercise equipment is provided. The stations are set in a way that clients perform both aerobic and strength exercises at an interval pace.

The 10-minute warm-up consists of participants and facilitators forming a circle, where each participant flexes their lungs by inflating a balloon with a single breath. They then perform preliminary exercise stretches such as leg swings, torso twists, and squats, rotating through each routine in 2-minute intervals. The 30-minute exercise session includes five stations: the first station uses jump ropes for leg strengthening exercises, the second station uses elastic bands (at least 2 meters long) for arm, shoulder, and back strengthening, the third station has wooden stepping boxes/boards (50cm x 30cm x 30cm) for various leg exercises, the fourth station involves passing a ball around in a small circle, and the fifth station includes stepping boards and sandbags of different weights for combined leg and arm exercises, with participants lifting bags according to their 1RM score. Participants rotate through all stations, spending 5 minutes at each.

The 5-minute cool-down involves less intense activities such as dancing and playing with a ball. A TB focal person and two volunteers are also part of the team, with their main role being to collect and document patient vitals such as blood pressure and oxygen saturation before and after exercises. These sessions occur twice a week, with the days chosen by the participants themselves. All equipment is locally sourced, and the TB focal personnel are based at the health center.

PTLD patients often suffer from poor socio-economic status, due to most of them being unable to earn a living independently. Many of them come from low-income households, lacking stable employment and facing financial instability. This economic hardship is compounded by the physical toll TB takes, which can result in long-term health issues and reduced capacity to work. As a result, they frequently struggle to afford even basic healthcare services, let alone specialized care for post-TB complications.

Misdiagnosis is a common issue, as many healthcare providers may not be adequately trained to recognize and manage PTLD conditions. The symptoms of TB, such as chronic cough, fatigue, and respiratory issues, are often mistaken for other common ailments, leading to inappropriate treatment and prolonged suffering. Additionally, the stigma associated with TB can prevent patients from seeking timely medical attention, further exacerbating their health problems.

These patients are also underserved due to the scarcity of healthcare facilities and trained personnel in their communities. Rural and remote areas, in particular, suffer from a lack of specialized healthcare services and professionals equipped to handle post-TB care. The healthcare infrastructure in these regions is often inadequate, with limited access to diagnostic tools, medications, and rehabilitation services. This scarcity leaves many post-TB patients without the necessary support to fully recover and manage their condition

This will improve the lives of the participants through;

Improved Physical Health: Regular aerobic and tension exercises strengthen respiratory muscles, enhancing lung function and capacity. Tailored exercise routines improve overall muscle strength, crucial for daily activities and mobility. Consistent exercise boosts cardiovascular health, leading to improved endurance and reduced fatigue. Additionally, physical exercises can relieve chronic pain and discomfort associated with post-TB conditions.

Enhanced Quality of Life: Improved physical strength and lung capacity enable participants to perform daily tasks more independently, enhancing their quality of life. Strengthened muscles and better endurance contribute to improved mobility, allowing participants to engage more actively in their communities. Regular monitoring and improved physical health decrease the frequency of hospital visits and readmissions, reducing the burden on healthcare systems.

Increased Knowledge and Self-Management: Participants gain valuable knowledge about lung health, self-care practices, and managing their conditions effectively through the program's education component. Empowered with knowledge and practical skills, participants can better manage their health, leading to sustained long-term benefits.

Social and Community Support: Participating in group exercises fosters a sense of community and support among participants, reducing feelings of isolation. Interacting with others who have similar experiences provides emotional support and encouragement.

Holistic Support: Providing nutritional guidance and support helps improve overall health and complements the physical exercise regimen. Access to behavioral and psychosocial support addresses mental health needs and helps participants cope with the emotional impact of their condition.

Long-Term Health Benefits: The commitment to regular exercise and health education ensures that participants continue to benefit even after the program ends. Early detection and continuous monitoring prevent the progression of respiratory issues and other related health problems.

Paradiso TB Patients Trust has created a thorough, community-based Post-TB Lung Rehabilitation Program. This program is run by committed volunteers and overseen by health workers at the Primary Health Care level. We provided training for 89 health workers and volunteers on implementing the affordable Lung Rehabilitation Program. We used low-cost resources made from local materials to address the care needs of TB patients as they move into the post-treatment phase.

The initial pilot phase of the intervention was introduced in 3 health facilities, positively impacting 38 individuals. Following a comprehensive analysis of the pilot results, it became evident that all participants experienced remarkable improvements in various aspects of their health, encompassing quality of life, exercise capacity, respiratory outcomes, and mental well-being. Notably, the positive outcomes became more pronounced after the 12-week mark compared to the 6-week assessment.

The intervention has now expanded to an additional 6 sites, showing a remarkable 200% growth from its initial implementation. Furthermore, the program's impact has recently been extended to 9 sites, marking a 100% growth from the second phase. This substantial expansion has been made possible through collaborative efforts with the National TB Leprosy Program. Together, standard operating procedures (SOPs), lung rehabilitation implementation pathways, and risk stratification models have been developed to ensure the effective and consistent implementation of this low-cost lung rehabilitation program across all of the sites.

The approach surpasses standard tuberculosis management by introducing post-TB Lung Rehabilitation that utilizes low-cost, easy-to-maintain, and straightforward methods. Instead of depending on highly qualified staff, the intervention engages community health workers and volunteers to provide post-TB lung rehabilitation for tuberculosis survivors experiencing symptoms of post-TB lung disease. Its arrangement, which includes training volunteers and the community makes it both scalable and sustainable. It can be easily replicated in different regions or scaled up to serve larger populations, providing a sustainable and scalable model for post-TB Lung Disease care. 

Unlike traditional setups, which mainly offer lung rehabilitation services at higher levels of healthcare, this solution aims to bring these services to primary healthcare and the community, making them more accessible and affordable. Moreover, this intervention is the first of its kind in Malawi. 

The fusion of exercise and education empowers participants to not only enhance their physical well-being but also gain more valuable insights into managing their lung health and overall wellness. Customizing the intensity of exercise to each individual's capabilities, considering their one-repetition maximum (1RM) and degree of impairment, ensures a safe, effective, and personalized rehabilitation process. 

Amgen's generous prize will have a transformative impact on the lung rehabilitation program in Malawi, significantly expanding its reach to a wider network of health facilities. Currently, the program is operational in only 18 out of 161 facilities, resulting in a substantial 79% gap in coverage. With Amgen's support, we will establish new sites, thereby reducing this gap to 51%. The funding will also enable the training of 50 community health workers and volunteers, equipping them with the necessary skills to provide vital support for post-TB lung rehabilitation intervention. This expansion is expected to benefit a total of 600 individuals with post-TB Lung Disease in the new sites, leading to improved lung functionality and an enhanced overall quality of life for the beneficiaries. 

Paradiso TB Patient Trust is exceptionally equipped to conduct the lung rehabilitation program in Malawi. We have championed this initiative by leveraging our collective expertise in healthcare, rehabilitation to create a comprehensive and effective program tailored to the needs of PTLD patients. 

One of our key accomplishments has been the development of guidelines and necessary reporting tools that ensure standardized care delivery and accurate data collection. These guidelines outline best practices, protocols for patient assessment, treatment plans, and monitoring procedures, ensuring consistency and quality across all sites.

Moreover, our success in implementing the program in multiple sites across Malawi speaks volumes about our capabilities. We have demonstrated a high success rate in improving patient outcomes, enhancing their quality of life, and reducing the burden of post-TB complications through our community based volunteers. Our team's dedication, collaborative approach, and continuous monitoring and evaluation have been instrumental in achieving these outcomes.

Overall, our team's commitment to excellence, innovation, and patient-centered care has made us a trusted leader in lung rehabilitation in Malawi. We are proud of our achievements and remain dedicated to furthering our impact and reaching more individuals in need.

Our primary objective is to minimize the adverse impact of Post-TB Lung Disease on the overall well-being of those affected. Through close collaboration with the Ministry of Health and a dedicated team of volunteers, we have made significant strides in identifying symptoms of post-TB lung disease. Our unwavering dedication drives us to expand our efforts to an additional 10 sites next year, to provide vital rehabilitation services to an additional 300 individuals.

Over the next five years, our ambition is to broaden our intervention to encompass at least 70% of health facilities in Malawi, delivering essential post-TB lung rehabilitation services. To ensure the efficacy of our efforts, we have established a comprehensive monitoring and evaluation system designed to collect data on the implementation of interventions and the individuals reached. By analyzing changes, we will be able to assess effectiveness, document successes and challenges, and make necessary improvements to positively impact the lives of those affected by post-TB lung complications.  

This program aims to manage Post-TB Lung Disease to restore full lung function. It provides additional care for clients, aligning with the organization's commitment to comprehensive treatment and care. The program supports post-TB patients with a 12-week long-term exercise commitment and aims to alleviate pain, address mental health issues, and promote self-management.

The initial step involves the mobilization of pulmonary TB survivors who are screened for post-TB using the symptomatic screening method. This mobilization is conducted with the assistance of health workers utilizing the TB register and community mobilization through volunteers. The output of this activity is pulmonary TB survivors mobilized for post-TB screening.

Subsequently, the screening for post-TB Lung Disease takes place. Eligibility for a post-TB Lung rehabilitation program is determined through a symptomatic screening process, in conjunction with a risk stratification process to exclude high-risk individuals and TB testing to rule out TB relapses. The screening process will inform TB B lung disease patients of their status. 

Upon completion of the screening process, all eligible individuals are enrolled in a 12-week Lung rehabilitation program. Participants are required to attend twice a week for 55-minute sessions, comprising health education for peer support and behavior modification, warm-up, exercise therapy for lung strengthening and body strength enhancement, and a cool-down period. 

Before engaging in physical activity, vital signs are monitored to minimize potential risks. The intensity of the exercise is tailored to individual capacity, while the duration and type of exercise remain standardized for all participants. A baseline assessment is conducted for all eligible individuals, evaluating parameters such as Dyspnea score, chest pain and its severity, cough on exertion, and Karnofsky scale. These parameters are also assessed at the end line to determine the program's impact. 

The overall outcome of Post TB lung rehabilitation is improved lung function, increased exercise tolerance, and better overall quality of life for the patients. It can also help in reducing symptoms such as cough, shortness of breath, and fatigue, and decrease the risk of recurrent respiratory infections. Furthermore, rehabilitation programs can aid in addressing the psychological and social impact of the disease, enabling patients to reintegrate into their communities and employment.

One of the beneficiaries of the program, Mr. Sasino Soko, shared his positive experience. Before the project, he had accepted living with the challenges of TB, believing that once cured of TB, he had to deal with the associated difficulties. He confessed to being unaware of the potential assistance available and the comprehensive support that goes beyond basic treatment in TB care.

The midterm evaluation for the project revealed that the intervention is highly efficient and effective, indicating the need for its expansion to all health facilities in Malawi. 

We currently have a team of 3, consisting of the Project lead, Monitoring and evaluation officer and a Project assistant. The Project Lead manages the program, makes sure it meets goals, and communicates with partners. The Monitoring and Evaluation Officer checks the program's progress, manages data, and helps improve the program. The Project Assistant handles daily tasks, organizes logistics, manages communication, and helps with administration to keep the program running smoothly, all on part time. 

Since 2020 to present. In 2020 we had inception in implementation districts and health facilities and developed the PTLD program with 3 physiotherapists. In 2021 we piloted the intervention in 3 facilities reaching 38 people. In 2022 to 2023 we extended the intervention to reach 769 patients   

We prioritize gender equality in all our activities, especially in our clubs. We encourage women to take on managerial roles, giving them equal chances for leadership and decision-making. This not only empowers women but also adds diverse perspectives to our management teams, making our program more effective.

We have a strong fraud whistleblower policy. This policy lets any team member report any suspicious activities without fear. It ensures transparency and accountability in our organization, promoting a culture of integrity and trust.

Our commitment to diversity is evident throughout our team. We have a diverse board, including a chairwoman, showing our dedication to gender equality at the highest level. Our board members come from various backgrounds, offering a wide range of insights that guide our decisions.

To minimize barriers for our team, we use inclusive hiring practices that focus on merit and potential. We offer ongoing training and professional development to help all team members grow in their careers. We also create an inclusive environment with team-building activities, allowing all team members to share their ideas and concerns. We believe that fostering a sense of family is crucial for maintaining high morale and productivity.

The lung rehabilitation program mainly benefits TB survivors who struggle with post-TB lung disease (PTLD). These individuals often experience decreased lung function, reduced physical strength, and mental health issues.

This program provides several essential services:

Lung Rehabilitation Exercises: We offer structured physical exercises tailored to each participant's abilities. These exercises include aerobic and strength training to improve lung capacity, muscle strength, and overall endurance.

Health Education: We provide educational sessions about TB, its symptoms, patients' rights, and the importance of nutrition. This helps participants understand their condition and manage it better.

Medical Support: We offer ongoing medical support through regular monitoring of vital signs like blood pressure and oxygen levels. This ensures that participants' health is tracked and any issues are addressed promptly.

We provide these services through community health centers. Participants attend twice-weekly sessions, where they engage in warm-up exercises, circuit training, and cool-down activities. The exercises are designed to be simple but effective, using locally sourced equipment like jump ropes, elastic bands, and stepping boxes. The program also includes health education to empower participants with knowledge about their condition and how to manage it.

Participants need these services because PTLD can significantly impact their quality of life. Without proper rehabilitation, they may experience persistent symptoms that limit their ability to work, socialize, and perform daily activities. This program helps them regain their strength and independence, improving their overall well-being.

Almost all participants have praised the program and recommended it be expanded to other communities. They have seen firsthand the benefits of improved lung function, increased strength, and better mental health. By scaling up the program, we can help more TB survivors lead healthier, more active lives. This widespread support from participants highlights the program's success and the urgent need for its expansion to reach more people in need.

We have successfully attracted other donors, such as the LHLI International, under whose project our volunteer clubs were initially formed. We have submitted 12 grant proposals and were awarded 3 grants last year, including one from the Global Fund to implement the PTLD program, indicating that our resource mobilization strategies are effective and that donors trust in our ability to deliver results. This year, we have submitted 4 more grant proposals.

Our volunteer clubs have developed their own income-generating activities, primarily through village savings and loans (VSL). Club members pool their money together, which is then used solely for club activities. This system not only supports the clubs financially but also fosters a sense of ownership and sustainability among the members.

We are advocating for the government to adopt our PLTD model into the national TB and leprosy policy. This would involve implementing the program in government facilities with the help of health center staff. This indicates that our approach is being recognized and valued at higher levels.