Author
Dr. Inga Jarosch and Tessa Schneeberger, as published in Alpha1 Journal 2/2023.
Most people know that physical training and knowledge of how to manage alpha-1 antitrypsin deficiency and COPD significantly contribute to a good quality of life. But how can effective, targeted training be integrated into everyday life? What simple tricks can help control and improve shortness of breath during exertion (and the fear of it)? And which exercises are best suited for each individual?
To optimize disease management outside of drug therapy, we have launched the PROMISE program, which is specifically designed for patients with alpha-1 antitrypsin deficiency.
What is PROMISE?
PROMISE is a personalized training and respiratory physiotherapy program for alpha-1 antitrypsin deficiency, offered by Pneumo Factory. The program aims to empower you to manage your condition effectively by providing non-pharmacological therapy components tailored to your individual needs. A training plan for endurance and strength exercises 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 lasts a total of eight weeks. Sessions 1 and 5 take place directly at the participant's home, eliminating travel costs for patients while still allowing for personal interaction and adjustments to individual exercises. Sessions 2 through 4 are conducted via video conference with the therapist. All sessions are spaced approximately two weeks apart (to be arranged individually), allowing participants time to independently practice the new training plan. The long-term goal is for the training to be integrated into daily life and performed regularly on an independent basis.
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 document any changes. To also examine the long-term benefits of the program, a final appointment takes place eight weeks after the fifth appointment, repeating all assessments. Naturally, all participants receive feedback on their personal progress!
Where can one currently participate in PROMISE?
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 (available at www.pneumo-factory.de). We currently have 14 places available for the PROMISE program. You can see the areas in Germany where we are active on the map above.
Who is behind PROMISE?
The content was developed by Pneumo Factory (Tessa Schneeberger and Dr. Inga Jarosch, both research associates at the Research Institute for Pneumological Rehabilitation, Schön Klinik Berchtesgadener Land) based on current scientific findings (www.pneumo-factory.de). Professor Koczulla, Chief Physician of Pulmonology at Schön Klinik Berchtesgadener Land, provided expert advice. Thanks to the generous support of CSL Behring, PROMISE has been offered free of charge to patients since October 2022. If you are interested in participating in PROMISE, please contact us by email. info@pneumo-factory.de.
We are happy to answer all your questions about the program!
