PROMISE goes into overtime!
Since October 2022, patients with Alpha-1 Antitrypsin Deficiency have had the opportunity to participate in our personalized training and respiratory physiotherapy program PROMISE, and we are very pleased that the program is being extended with another 25 places!
What is changing?
- The program will now nationwide Offered: To also be able to provide care to interested patients who do not live in our catchment area, we have switched PROMISE to a purely digital program. We will, of course, provide support with any technical questions.
What remains the same?
Our goal: Most people know that physical exercise and knowledge of how to manage alpha-1 antitrypsin deficiency and COPD significantly contribute to a good quality of life. But how can you effectively integrate targeted training into your daily routine? What simple tricks can help you control and improve shortness of breath during exertion (and the fear of it)? And which exercises are best suited for you personally?
To optimize disease management outside of drug therapy, we have launched the PROMISE program, which is specifically designed for Alpha-1 Antitrypsin Deficiency patients.
The content:
PROMISE is offered by Pneumo Factory (located in Schönau am Königssee) with financial support from CSL Behring. The program aims to empower you to become a competent manager of your condition by providing non-pharmacological therapy components tailored to your individual needs. A training plan for endurance and strength training is created, which can be performed in your own home without the need for any equipment. Furthermore, essential respiratory physiotherapy techniques, such as pursed-lip breathing, are reviewed and taught, and practical information is provided on topics such as mental health, long-term oxygen therapy, and nutrition.
How long does the program last?
The program initially lasts 8 weeks and includes 6 digital appointments via video conference (using a data protection-compliant platform) with a therapist from Pneumo Factory (physiotherapists, sports scientists). All appointments are spaced approximately 2 weeks apart (by individual arrangement), allowing participants time to independently try out the new training plan in the interim. The long-term goal is for the training to be integrated into daily life and carried out independently and regularly! Furthermore, a digital follow-up session takes place 8 weeks after the last regular appointment (Figure 1).
How can I tell if the program was effective?
At the first appointment, a comprehensive assessment is conducted according to scientific standards, allowing for an evaluation of physical performance, quality of life, and symptom intensity. These assessments are repeated at the fifth appointment to track any changes. To examine the long-term benefits of the program, a final, sixth appointment takes place eight weeks after the fifth, repeating all assessments. Naturally, all participants will receive feedback on their personal progress upon request.
Who is behind PROMISE?
The content was developed by Pneumo Factory (Dr. Tessa Schneeberger [MSc. Sports Physiotherapist, Respiratory Physiotherapist] and Dr. Inga Jarosch [Dipl. Sports Scientist], both research associates and speakers for the Respiratory Physiotherapy Working Group, the Respiratory Therapist Training Program, and the Heart LAG Training Program) based on current scientific findings (www.pneumo-factory.de). Thanks to the generous support of CSL Behring, PROMISE can be offered free of charge to patients.
Who can participate?
Any patient with alpha-1 antitrypsin deficiency who suffers from COPD and feels limited in their daily life by the disease can participate in PROMISE free of charge. To rule out any medical contraindications for training before participating in PROMISE, training approval from your general practitioner or pulmonologist is required (the form is available for download at www.pneumo-factory.de or upon request at info@pneumo-factory.de). To date, 46 participants have successfully completed PROMISE.
What do PROMISE participants say?
- „…The therapist was a stroke of luck, because he was not only very personable, but also highly competent and goal-oriented. I quickly realized this, as he identified my shortcomings, weaknesses, and exercise needs in a short time. (…) I was praised, because the targets set at our first meeting were exceeded. I had already noticed this myself, as my shortness of breath when climbing stairs or walking uphill had decreased, my strength had increased, and I felt fitter overall…“
- …“Whether my empyema (…) has improved, I cannot say, but I definitely know that I can breathe much better, that I no longer have panic attacks of shortness of breath, and especially… I am no longer afraid of climbing stairs! The correct technique, pursed-lip breathing, the right pace, the correct inhalation and exhalation, etc., I had previously paid too little attention to all of that…“
- „…The therapist ensured that I could easily integrate my training sessions into my daily routine and also addressed any health setbacks. All in all, my physical performance has noticeably improved, and I'm coping much better with everyday life. Climbing stairs, in particular, is now easier than at the beginning. The program also motivated me to stay committed and continue working on my fitness, nutrition, and self-care. I'm very grateful that I was able to participate in the program and would gladly recommend it…„
Are you also interested in participating in PROMISE or do you have any questions about it? Then please contact us by email: info@pneumo-factory.de. We are happy to answer all your questions about the program!
You can download this information page here:
