Author
Summary: Gabi Niethammer, as published in Alpha1 Journal 1/2023.
The inactivity spiral: Effects of a chronic lung disease
The idea to start the PROMISE project began with an examination of the effects of COPD on the body and mind.
The primary problem, shortness of breath, leads to a downward spiral of decreased physical activity, which in turn reduces endurance and strength. This, in turn, exacerbates the shortness of breath – a vicious cycle that, if left unchecked, can culminate in immobility. Furthermore, anxiety symptoms can intensify the shortness of breath and lead to psychosocial impairments. COPD, therefore, affects the whole person and has far-reaching consequences.
Ways out of the vicious cycle
The best approach is multimodal programs, meaning programs that take place on several levels with various components. In addition to physiotherapy, physical training, and nutritional counseling, many other components are therefore used.
The classic example of a multimodal program is inpatient pulmonary rehabilitation. Studies have shown, using COPD as an example, that rehabilitation as a multimodal measure is the most effective therapeutic approach to reduce shortness of breath, increase physical performance, and improve overall quality of life.
The problem is that therapeutic measures work similarly to medications; that is, they are only effective as long as they are implemented. Therefore, one of the main tasks, and arguably the greatest challenge, is to transfer these measures from inpatient rehabilitation into everyday life and thus establish a long-term, health-promoting lifestyle.
Barriers to training
Besides the well-known "inner couch potato", there are various other barriers that prevent training from being carried out:
- No entry to gyms – primarily affects severely affected individuals (LTOT)
- Rural areas – long travel distances vs. resilience
- Fear Avoidance – Fear of shortness of breath during exertion
- Insufficient awareness of non-drug treatment options • Often inadequate expertise in the therapeutic field – e.g., correct training load
The solution: PROMISE – Personalized training and respiratory physiotherapy for Alpha-1 antitrypsin deficiency
The program was developed by Pneumo Factory and is thankfully financially supported by CSL Behring.
The Pneumo Factory was founded by the speaker together with her colleague Tessa Schneeberger and is currently supported by two other therapists. All have many years of experience in pulmonology and have made it their goal to close as many small gaps in care as possible. PROMISE is their initial project.
PROMISE is a multimodal concept with many individual components designed for maximum effectiveness. The one-on-one therapy is personalized and conducted under the guidance of competent and experienced pulmonologists, and is delivered in a hybrid format, combining in-person appointments at home with digital therapy.
PROMISE goals
The functional health of individuals with AATM should be maintained or improved as much as possible. This means
- more quality of life
- greater physical performance and more strength
- fewer symptoms such as shortness of breath, anxiety, depression
- better self-management
and leads secondarily to
- better social participation
- fewer sick days
- fewer acute exacerbations and hospital stays
- lower utilization of medical services
Who can participate?
This program is designed for COPD patients with alpha-1 antitrypsin deficiency, regardless of whether they have mild or severe lung function impairments. Physical limitations can include, for example, shortness of breath when walking uphill or a subjectively perceived reduction in physical performance. Using a walker or requiring long-term oxygen therapy are not obstacles; on the contrary, it is particularly challenging, yet also crucial, for these groups to receive appropriate training to mitigate the significant deconditioning. Participation in the program is independent of alpha-1 antitrypsin replacement therapy (none/Respreeza/Prolastin) and is free of charge. It is essential that the patient's primary care physician or pulmonologist provides general training clearance.
Currently, the project is limited to the German states of Bavaria and North Rhine-Westphalia, as well as the Frankfurt area. Once more experienced therapists are found in other parts of Germany, the project will be expanded geographically.
Key components of PROMISE
PROMISE, as a multimodal training program, includes the following modules:
- Strength training, primarily using body weight and resistance bands
- Endurance training through walking, Nordic walking and/or stationary cycling
- Respiratory physiotherapy with a focus on pursed-lip breathing
- Physical activity, such as stair training
- Knowledge and self-competence thanks to short, concise training courses
- meaningful measurements (assessment) before and after the program
To monitor participant progress, physical performance is measured using the 1-minute stand-up test. Questionnaires assess quality of life and symptoms such as shortness of breath, depression, and anxiety. Optionally, physical activity can also be measured using the participant's own smartphone/smartwatch. A scientific evaluation will be conducted to use the data for further learning and program optimization.
Timeline
It starts with the patient making contact, continues with the aforementioned training approval signed by the treating physician, and then, after scheduling an appointment, the therapy begins. The first appointment takes place in person at the patient's home so that the therapist and patient can get to know each other and the therapist can incorporate the patient's environment into the training program.
Following this, three digital appointments take place at two-week intervals, and in week eight, a further in-person appointment is held to discuss the long-term training plan, which patients will then manage independently. Between appointments, patients train independently according to their individual abilities.
In week 16, there will be a follow-up session to jointly evaluate whether the program has met expectations and is sufficiently helping participants adhere to the therapy plan even without professional support. Measurements will be taken at all three in-person appointments. PROMISE utilizes the Red Medical video platform, which meets data protection requirements for medical patient contact. Participants will receive training with their therapist. Pulmonary exercise, both in-person and online, is an excellent complement to the program.
CSL Behring has printed four brochures for the PROSMISE therapy program, covering the topics of endurance training, strength training, respiratory physiotherapy, and physical activity, and providing a theoretical overview of the program. Patients receive these brochures when they participate in PROSMISE.
Current status of the program
- Eleven participants have taken part so far.
- Two participants have already completed the program.
- Six participants completed their last in-person session by the beginning of May.
- CSL Behring has agreed to extend the project until mid-2024; there are approximately 25 places available.
- Since the Alpha-1 meeting in Bad Wildungen, 9 more patients have started the program.
- The first data presentation is planned to take place nationally at the DGP 2024 and internationally at the ERS 2024.
Conclusion
Participants who completed the program said in feedback sessions that the training had improved their quality of life, that they felt better physically and mentally than before the therapy, that their stamina was better, and that they had gained muscle mass. This made everyday life considerably easier, which motivated the participants to definitely continue.
