Diagnostics

The AlphaCare program offers comprehensive information on alpha-1 antitrypsin deficiency, support services, and assistance. It is aimed not only at patients but also at family members and other interested individuals. The project was primarily developed by patients for patients, with the participation of physicians and other experts. The concept was collaboratively developed through discussions and workshops, with the patient organization Alpha1 Deutschland e.V. continuously involved. The project developers aim to enable patients to better manage their illness, improve treatment adherence, and enhance their quality of life through AlphaCare. The program also seeks to relieve the burden on medical practices by providing additional information. Registration for the program is non-binding, and withdrawal is possible at any time. The service is free of charge for participants. The company Grifols is significantly involved in the development and financial support of the project. However, personal patient data will never be shared with Grifols.

The three levels

AlphaCare includes three different service programs. Extensive information about the disease itself, living with AATM, and important addresses is freely available online.,
For example, from the Alpha Centers. Level 2 is intended for patients with AATM. It can be accessed after registering in writing and signing the consent form. Here, you can contact the service hotline or watch videos from experts on AlphaCare-TV. Information is available on exercise, nutrition, and smoking cessation. Level 3 is specifically for people undergoing alpha-1 antitrypsin replacement therapy. It can be accessed by providing the batch number of your alpha-1 antitrypsin medication. Here, you will find more detailed information about therapy with Prolastin®. AlphaCare health advisors offer individual coaching. You can also access the patient magazine AlphaCare Magazine and keep your own therapy diary.

Topics

To help people quit smoking, AlphaCare offers telephone consultations with a health coach. Information is available on a DVD and in expert brochures on the topic of smoking cessation. AlphaCare also promotes exercise training. The DVD "Breathing Therapy and Exercises to Follow Along," led by Michaela Frisch, can be ordered. Expert brochures are available on the topics of sports and exercise in everyday life and on breathing therapy. A service hotline is also available for nutritional questions. Additionally, there is audio coaching and an expert brochure. The members-only area for registered members offers further resources, such as the "Tip of the Week" "from patients for patients," expert advice, a mentoring program connecting newly diagnosed and experienced AATM patients, and video interviews with experts.

materials

In collaboration with leading experts and patients, expert brochures focusing on "Living with the Illness" have been developed. These brochures cover topics such as the illness and its treatment, nutrition, exercise, legal issues, and social aspects. Other publications address partnerships and the desire to have children. The travel brochure, for example, covers the topic of "Flying with Oxygen Therapy." For patients on opioid substitution therapy who have registered with the third service area, there is also a starter kit containing a special bag, a thermal mug, a pedometer with an activity log, and various CDs and brochures.

Hotline

The AlphaCare service hotline is staffed by specially trained personnel, primarily nurses and medical assistants. They are available on weekdays between 8:00 a.m. and 8:00 p.m. to answer general questions about the illness. The hotline staff also provide advice on nutrition, exercise, and smoking cessation. Individual medical questions cannot be discussed with the service staff. The phone call does not replace a doctor's visit or contacting the emergency medical service. However, many of the patients' "minor" questions can be answered, thus relieving the burden on doctors' offices.

Conclusion

In summary, there are good reasons to register for the AlphaCare service program. AlphaCare is the contact point for the "little" questions about the illness, for which there is sometimes not enough time in the doctor's office. Participants receive concrete support in managing their illness and high-quality service materials. AlphaCare never interferes with the therapy, because nothing can replace the consultation with the treating physician.

Thus appeared in Alpha1 Journal 01/2015.

About the program.