Arie Knipscheer, as appeared in Alpha1 Journal 2/2023.

After undergoing rehabilitation at the Berchtesgadener Land Clinic in Schönau am Königssee in 2018 and 2020, I wanted to breathe in some sea air again this year, which is beneficial for most of us with lung conditions. After browsing the very positive reviews on the website "Klinikbewertungen.de", I chose the Baltic Sea Clinic.

I submitted my application for rehabilitation back in January 2022, after a check-up at the Ruhrland Clinic, where it was recommended. Unfortunately, my family doctor made a mistake on the application. She checked "no restrictions" everywhere, which led to the rehabilitation being rejected. I didn't notice the error either, because she only filled out the application after I asked her several times and handed it to me in a rush the day before my vacation. To avoid wasting any more time, I quickly scanned the application and sent it by email. I then filed an appeal against the rejection, which was ultimately approved. In addition, the waiting times due to the pandemic were so long that I was finally able to start my rehabilitation in May or June 2023.

Up until now, I've always taken public transport to my rehabilitation clinic. This time I opted for the car, as traveling with an oxygen concentrator and changing trains would be quite complicated. It's just over 600 km from my hometown of Duisburg to Prerow, a distance I was able to cover without any traffic jams on both the outward and return journeys.
Arriving on the Darß peninsula, I was overwhelmed by the magnificent landscape and the elaborately restored houses in the North German style. At the hospital, I received a friendly welcome at reception and was able to park my car in a gated parking lot for €2 per day. The hospital is located right on the beach, which is a maximum 5-minute walk away.

After settling into my lovely room with a balcony, I went straight to dinner. Two new companions were waiting for me there, with whom I later went on several bike rides. Dinner consisted of the usual bread with various cold cuts.

The next day I went for my initial examination, which included lung function tests and a gait test. The ward physician asked me about my preferences regarding treatments, and from my perspective, a well-balanced plan was created, including water aerobics in the very nice, large in-house swimming pool, moderate Nordic walking, and strength training. To put it bluntly: the strength training was significantly lacking. While the equipment was modern, it was rather basic. As a result, the time available for training was very limited. This is quite different from what I'm used to at the Berchtesgadener Land Clinic. There, patients are encouraged to use the equipment every day, as muscle building is very important for people with lung conditions.

Marion Wilkens Alpha1 Germany eV, as published in Alpha1 Journal 2/2023.

According to the Federal Ministry of Health, "rehabilitation services" encompass all medical services that serve to prevent, eliminate, reduce or compensate for a disability or need for care, to prevent its worsening, or to mitigate its consequences.

Rehabilitation and preventive care services can be provided on an outpatient or inpatient basis; they can be provided at the place of residence (in the case of mobile rehabilitation, even in the home of the person to be rehabilitated or, for example, in a care facility), in a recognized rehabilitation clinic or in an inpatient preventive care facility.“

If only it were always as easy as it sounds. Locally? Who among you has a rehabilitation facility nearby that specializes in alpha-1 deficiency? Having one close to home would be a dream come true.

Summary: Prof. Gratiana Steinkamp, as published in Alpha1 Journal 1/2023.

The term physical activity describes what one actually does each day. Medical professionals understand capacity to mean what one is capable of doing or what one could physically accomplish. This doesn't mean that one actually does it. It is clear, however, that a lot of activity leads to better capacity. Medical rehabilitation aims to improve capacity in the long term. Maintaining good capacity is a lifelong task for everyone, and especially for those with chronic illnesses.

The influence of exercise on health and illness

How quickly a lack of physical activity affects your capacity becomes apparent when you've had to spend a few days in bed due to illness. When you get up for the first time afterward, your legs feel wobbly. You've lost muscle mass from lying down. In cases of severe illness, up to 1 kg of muscle can be lost per day. Considering that women have an average of about 30 kg and men around 35 kg of muscle mass, 1 kg is a considerable amount. The COVID-19 pandemic has shown that it can take a while to regain your previous level of performance.

While humans have continued to evolve in terms of thought and inventions, the amount of physical activity has decreased drastically: while Stone Age people covered distances of around 30 km per day, this figure had dropped to only about 15 km per day by the 19th century. Nowadays, most of our time is spent sitting, and many people walk only 1 km a day.

The World Health Organization (WHO) recommends two and a half hours of physical activity per week as a physical activity goal. In its October 2022 report, the WHO details how prevalent physical inactivity has become. Approximately 80 percent of adolescents and 60 percent of those over 70 are not physically active enough; the situation is slightly better for other adults, at 60 percent. Germany fares worse than its neighbors. In poorer countries, lack of exercise is a much less common problem than in wealthier ones. Furthermore, the average daily step count decreased by a third due to the COVID-19 pandemic. This, too, has contributed to the pandemic's negative impact on health.

Sara Souto Miranda, PhD student at the School of Health Sciences of the University of Aveiro (ESSUA) Portugal

Sara Souto Miranda, a doctoral student at the School of Health Sciences of the University of Aveiro (ESSUA) Portugal, brought the following online study to our attention:
Delphi survey for a core outcome set for pulmonary rehabilitation in patients with chronic obstructive pulmonary disease (COPD)

Goal

Help us define a core outcome set for the pulmonary rehabilitation of people with COPD by participating in a Delphi survey.

What is a core result set?

A core outcome set is an agreed-upon standardized set of outcomes that should be measured and reported at a minimum in all clinical trials in certain areas of health or healthcare.

Why do we need a core outcome set for pulmonary rehabilitation?

There is significant heterogeneity in the outcomes/effects and interventions reported for pulmonary rehabilitation in people with COPD. This complicates the comparison of studies and programs, effective evidence synthesis, and benchmarking of pulmonary rehabilitation.

Who can participate in the survey?

People with COPD:

• have a diagnosis of COPD
• Have participated in pulmonary rehabilitation

Informal caregivers

• Adult
• Informal relationship with a person with COPD (e.g., family member, friend, neighbor)
• Support (physical, emotional, financial, logistical) for a person with COPD who has participated in pulmonary rehabilitation.

Healthcare professionals, researchers, political decision-makers

• Adult
• Involved in the conception, implementation and/or evaluation of pulmonary rehabilitation measures or their data.

Rehabilitation in times of COVID-19

Prof. Dr. R. Koczulla, Dr. Dr. Tobias Böselt and Dr. Inga Jarosch

Course of the disease

The COVID-19 disease, caused by the novel SARS-CoV-2 virus, originated in China and spread to Europe. Since early/mid-March, the pandemic has also been unfolding in Germany, with severe, sometimes unexpected, cases and fatalities.

Besides asymptomatic infections, mild to moderate cases are observed, but also very severe cases that lead to hospitalization and intensive care. Unfortunately, fatalities also occur.

In approximately 801 of the registered infections, the disease presents with fever or mild symptoms. In about 151 of the cases, it is more severe, and in 51 of the cases, it is so severe that intensive care is necessary because the condition is considered critical or life-threatening.

Bilateral pneumonia with respiratory failure is a key pathology in severe cases. To date, there are no data specifically describing the course of the disease in Alpha-1 patients.

Proof

Diagnosis is made via a deep nasal/pharyngeal swab. We assume an incubation period of 14 days. Typical symptoms are fever, cough, and shortness of breath. However, asymptomatic cases are also possible. Diarrhea may occur, as well as changes in the sense of smell and taste. Shortness of breath, fatigue, and muscle pain can be further typical symptoms. In addition to lung involvement, cardiovascular involvement has been described. Neurological changes have been reported, including ischemic stroke, thromboembolic events, meningitis, headaches, altered mental status, and critical illness polyneuropathy following a severe hospital stay.

prophylaxis

For preventative measures, the recommendations issued by the Robert Koch Institute apply. Maintaining distance, wearing a face mask, and regular hand disinfection are important and can be found in all recommendations.

Therapy in the acute phase

Currently, there is neither a specific treatment for COVID-19 nor a vaccine. Besides symptomatic treatment—that is, administering oxygen when oxygen saturation drops and blood oxygen levels are low—treatment options include mechanical ventilation and intensive care for severe cases. There are some studies on medications—such as the antiviral drug Remdesivir, which can shorten the course of the disease by a few days.

Post-acute phase

How should someone recovering from a COVID-19 infection be cared for afterward? A prompt follow-up appointment with a pulmonologist is certainly advisable, where lung function tests, blood gas analysis, and diffusion capacity measurements could be useful. If heart problems are present, a cardiac examination should also be performed. In cases of severe impairment, imaging in the form of a high-resolution CT scan may be beneficial. Further diagnostic procedures should be determined based on the CT findings.
According to current understanding, Alpha-1 ATG administration should not be interrupted if possible. The research group led by McElvaney was able to show (New England Journal 2020) that interrupting alpha-1 AT therapy leads to an increased exacerbation rate.
It is assumed that everyday physical activities such as walking and moderate physical training are beneficial in the post-acute phase.

Inpatient rehabilitation

Furthermore, the care provided after mild to severe cases of COVID-19 is certainly an important consideration. As a direct consequence of COVID-19, it is assumed that the number of patients with long-term health consequences related to COVID-19 will increase significantly. While patients with asymptomatic cases appear to recover completely and without long-term limitations, initial studies show that mild, severe, and critical cases of the disease have lasting effects in various areas (cognitive function, skeletal muscles, mental health, etc.). Clinical observations indicate that COVID-19 is primarily characterized by lung damage and can thus lead to persistent shortness of breath. Impairments in blood clotting are also observed, which can sometimes lead to the occlusion of smaller vessels or even to a pulmonary embolism. The specific consequences of COVID-19 in patients with a pre-existing lung condition such as alpha-1 antitrypsin deficiency are currently largely unknown. It is assumed that the long-term effects of the disease can be addressed and reduced through specialized rehabilitation. Data from the 2003 SARS-CoV-1 outbreak show that rehabilitation can positively influence the post-acute course of the disease. The content of pulmonary rehabilitation (PR) in the post-acute COVID-19 phase is based on established pulmonary rehabilitation programs for chronic lung diseases. In the international PR guidelines of the American Thoracic Society (ATS) and the European Respiratory Society (ERS), PR has become established as a core component of disease management for patients with chronic respiratory diseases. Studies demonstrate clear positive effects on physical performance, quality of life, and symptoms (shortness of breath, fatigue).

A Swiss group of authors proposed using the same rehabilitation treatments recommended for patients with pulmonary fibrosis, as the observed pulmonary and extrapulmonary symptoms are very similar (Carda 2020, Kenn 2013). This comprehensive, multimodal, and multidisciplinary therapeutic approach combines both pharmacological and non-pharmacological therapies. In addition to optimizing medical care, a targeted exercise program is a core component. Physical training in pulmonary rehabilitation (PR) consists of at least individually tailored endurance and strength training, which should be conducted with a mobile oxygen supply in cases of severely reduced blood oxygen saturation. Another component of PR is respiratory physiotherapy, which aims to restore respiratory function as much as possible and to teach symptom-reducing breathing techniques for both rest and exertion. Furthermore, psychological support and knowledge transfer are important components of PR. The extent to which these components are also optimal in patients who have experienced COVID-19, or whether they can be further improved, will be determined in clinical practice over the coming weeks and in further studies.
to reveal on this topic.

Naturally, the COVID-19 situation has significantly changed the procedures in our hospital. In the first weeks after the outbreak of the pandemic up to the present day, we have actively helped care for COVID-19 patients.
We resumed routine operations at the end of May, but we continue to keep rooms physically separate for COVID-19 patients. We have implemented special hygiene measures in our daily routines, as prescribed by the Robert Koch Institute (RKI). A dedicated team is available for COVID-19 patients.

We have also begun developing a concept for post-COVID-19 patients, which is intended to meet the needs of this specific patient group and is also being addressed within the framework of studies. In general, we have meticulously implemented the hygiene regulations of the Robert Koch Institute (RKI) throughout the hospital. With the easing of the corresponding social distancing measures across Germany, there is, of course, a general risk of reinfections occurring, which could lead to a renewed exacerbation of the COVID-19 situation in hospitals as well.

The Schön Clinic in Berchtesgaden: Pulmonary rehabilitation at the highest level

Alpha1 Germany eV.

Numerous scientific studies – including many from the Schön Clinic Berchtesgadener Land – demonstrate that patients with lung and respiratory diseases can benefit enormously from rehabilitative approaches. Especially for patients with chronic obstructive pulmonary disease (COPD), physical training is among the most effective measures and sometimes achieves greater success than purely drug-based therapies. Patients regain physical fitness, can expand their range of activities, and experience a return to a better quality of life. The Schön Clinic Berchtesgadener Land (BGL) is a nationally recognized specialist rehabilitation clinic with the medical focus areas of orthopedics, psychosomatics, and pulmonology.

The Center for Pneumology, Allergology, Sleep Medicine, and Respiratory Care is headed by Prof. Andreas Rembert Koczulla, who took over the position of Chief Physician from Prof. Dr. Klaus Kenn in August 2018 and, according to the current Focus Rehabilitation List 2019, has been recognized for top medicine, top quality, and top rehabilitation clinic status. Prof. Koczulla and Prof. Kenn hold Germany's only professorship for pulmonary rehabilitation. As a research institution of Philipps University of Marburg, the clinic maintains close ties with international lung centers and is committed to continuously developing pulmonary rehabilitation concepts and directly transferring this expertise to patients. The primary goal is not only to ease breathing but, above all, to improve the quality of life and psychological well-being (e.g., anxiety about breathlessness) of those affected.

The most important indications at a glance:

• Chronic obstructive bronchitis with/without pulmonary emphysema (COPD)
• Alpha-1-antitrypsin deficiency (AATM)
• asthma
• Vocal Cord Dysfunction
• Pulmonary fibrosis
• Sleep-related breathing disorders
• Rare lung diseases
• Condition after lung transplant

The Schön Clinic Berchtesgadener is Europe's largest center for the pre- and post-operative care of lung transplant recipients. Furthermore, as an Alpha-1 Center, the clinic provides care for patients with congenital AATD. Due to the limited options for drug treatment, non-drug therapies, and in particular exercise therapy, are of paramount importance. Professor Koczulla and his team possess extensive experience and specialized expertise in treating this condition.

Click here to go to the Schön Clinic.