Unfortunately, in respiratory therapy, a patient's cough reflex is far too rarely checked using a peak flow meter, even though a certain cough velocity is necessary to expel mucus. If various mucus clearance techniques are applied to a patient with severe lung disease, and the patient's weak cough prevents them from clearing the mucus from the lungs, the problem is exacerbated. Therefore, if necessary, the cough reflex should be addressed first.

An ineffective cough poses not only reduced secretion removal from the airways but also other health risks: among other things, it increases the risk of infection and leads to a deterioration in blood oxygen saturation.

The amount of mucus produced is crucial for assessment – not only for healthcare professionals, but also for each individual patient. Therefore, it is so important to regularly check your mucus, as its consistency can indicate, for example, whether it is advisable to continue inhaling high-dose saline solution. If the mucus is already quite thin and frothy, further inhalation is not recommended, because maintaining a certain viscosity is important for the mucus to be cleared.

The main goal of physiotherapy is to get the air behind the mucus so that it can then be exhaled and transported upwards. An important aid in this process is to hold your breath briefly before exhaling. This is another technique that patients learn during respiratory therapy. In this situation, hypertonic saline solution with 3.6 or 7 % is also more helpful than isotonic saline solution with 0.9 %. Patients should gradually get used to the higher percentages when inhaling, as the biggest problem is usually the inhalation technique, not the medication itself. Unfortunately, we repeatedly observe that a large proportion of inhalation patients use their devices incorrectly, resulting in only a fraction of the medication reaching the lungs.

There are different inhalation techniques:

• Humidity humidifier (the Pariboy® is particularly well-known here)
• Metered-dose inhalers (emergency spray)
• Powder inhalers

The main goal is to always get as much of the inhalant into the lungs as possible.

With a nebulizer, a considerable amount of medication tends to get trapped in the nebulizer. Furthermore, the medication has to be forced through an almost right-angled bend between the mouth and esophagus. To prevent the medication from getting stuck in the throat, it's important to tilt your head back slightly while inhaling to straighten this bend. Under no circumstances should you look down while inhaling, not even to look at an inhalation technique on your phone, for example.

The faster the patient inhales the medication, the less effectively it reaches the lungs. Therefore, the goal is always to inhale as slowly as possible.

The ultimate in inhalation technique is indeed the metered-dose inhaler! For example: A typical patient in the clinic, using a walker, arrives at one of my exercise classes and immediately uses his emergency inhaler upon arrival.

Because he is completely dynamically overinflated from running (visible in his raised shoulders), not much medication can reach his lungs. Ideally, the patient should first exhale air for the medication to be effective. Then it's crucial to inhale the rescue inhaler as slowly as possible. This is difficult because it shoots out of the metered-dose inhaler at 100 km/h, and the goal is to get it around the back of the throat at approximately 20 km/h. To achieve this, the patient must first inhale two or three times without pursed lips and exhale slowly. With his head tilted slightly back, the task is then to force the medication into the exhaled breath and subsequently hold it so that the active ingredient can be released into the lungs. It's actually as complicated as it sounds, and it's very helpful to practice the correct technique with a respiratory therapist.

There are also other things to consider when using wet and dry powder inhalers: Often, far too much medication gets stuck to the teeth, for example, because the patient wants to keep their hands free and therefore holds the inhaler with their teeth. If the pressure from the teeth is too high, the tongue automatically moves upwards and the medication ends up under the teeth instead of in the lungs.

Today we know that between 30 and 100 liters of air are needed for dry powder inhalers. The medication is bound to lactose and separates from it. If you inhale too forcefully, the lactose is forced into the throat, which can lead to voice changes and restricted breathing. Newer devices have a trigger that controls the inhalation rate and only require 30–40 liters. Due to the patient's own need for air, it is difficult to inhale slowly. Therefore, the patient should be trained by a physiotherapist to select the most suitable device for them.

A major problem is dynamic hyperinflation. The patient repeatedly inhales more than they exhale. This causes the shoulders to rise, creating the typical "belt effect," as if someone had fastened a belt around the chest. The result is that the patient tries to inhale against this feeling, only to feel even more constricted, leading them to believe the medication isn't working. However, the problem here isn't the inhalant, but the hyperinflation itself, which must first be addressed.

For secretion management, I, as a therapist, prefer to use my hands. For home use, there are helpful aids, such as oscillating PEP systems, which provide positive expiratory resistance, ensuring that the airways remain open and stale air can be expelled. Some systems are amplified by tones, giving the patient even better control. The most affordable PEP system is pursed-lip breathing, followed by a straw, the casing of a small disposable syringe, and systems like the Pari-PEP® or BA-Tube®. It's essential to start with the lowest possible resistance and determine which resistance allows the airways to remain open for the longest possible time.

For secretion mobilization, there are other aids available, some of which are only used in other countries. For example, a very expensive American vest, while it does create significant lung movement, does not replace the patient's own need to perform secretion-loosening breathing exercises. Various other devices, such as autogenic drainage, the Active Cycle of Breathing Technique, or the Simeox® Physioassistant, complete the range of options. They all have advantages and disadvantages that the patient should discuss with their therapist.

As a physiotherapist, my focus is on truly working with the patient, feeling where the problem lies, and then treating it. It's important to emphasize that I can only provide support, and the primary responsibility for breathing lies with the patient. Therefore, their willingness to cooperate is essential.

Once the mucus has cleared, the crucial thing for the patient is to get moving. The vicious cycle of "I can't breathe properly, and when I can't breathe properly, I do less, and then I can't breathe properly even more, and I can do even less" must be broken, otherwise social contact will decrease and avoidance strategies will increase. It is essential to break this downward spiral of inactivity. Controlled physical activity, regardless of severity or age, can have positive effects on various organs and improve quality of life. It is important to note that movement should be adapted to breathing, not the other way around.

For those not affected, it's important to know that the work of breathing in a COPD patient is already twelve times (!) higher at rest. Furthermore, a finger pulse oximeter, with its saturation measurement, provides no information about how well the patient is actually breathing. For example, a patient with a saturation of 75 might be able to complete a 380-meter walk test, while another with a saturation of 98 might only manage about 100 meters.

To begin to understand the limitations experienced by a family member, a person with healthy lungs can sit down and breathe through a straw. If they then try to do exercises, they will likely be unable to continue after 40 seconds because of the extreme lack of air.

Working with the physiotherapist also serves to teach economical techniques:

• Reducing anxiety
• Energy saving
• Building muscle
• Independence / Self-esteem
• Maintaining livelihoods (e.g., for single people)

In my clinical practice, I frequently observe that patients undergoing stress tests assume the settings on their portable oxygen concentrators correspond to the number of liters of oxygen delivered. A portable concentrator at setting 5 does not equate to 5 liters of oxygen. During exertion, our breathing becomes faster, and the device is then continuously activated. However, if the patient is already exhaling, they are no longer adequately supplied with oxygen, and a demand-based system might not be the right choice during exertion. Therefore, it is always necessary to assess each individual case to determine whether a continuous flow system might be a better option for training.

When choosing a rollator, it is essential to ensure that it fits the user's body type so that they can stand upright with it, thus improving their breathing. Therefore, it is important to pay attention to this and provide guidance, as posture can affect vital capacity by up to 30 percent.

Strength, endurance, flexibility, and coordination should all be trained. As a therapist, it's important for me to create an individualized training plan that's accessible to patients and makes them feel confident in their ability to manage the workload. The most important thing at the beginning is for the patient to get moving and stay motivated by small successes. We often use interval training of 30 to 60 seconds followed by a 30-second break. This allows the lungs time to deflate before the next interval. The individualized training plan also includes a detailed assessment of the patient's living situation, such as whether they have to climb stairs at home, whether they enjoy cycling, whether they frequently have to carry heavy shopping bags, and so on.

To achieve a training effect, you should train two to three times a week, allowing sufficient recovery time. More frequent training leads to little or no performance improvement; in fact, it increases the risk of injury while simultaneously reducing fitness. To maintain performance, one session per week at a consistent intensity is recommended.

The goal is to train precisely the skills the individual needs in their life. And to ensure they maintain these skills long-term, even after their time in the clinic, it's important that the exercise is enjoyable. Today, there are many excellent fitness apps with interesting training approaches (e.g.,...). the PROMISE sports program by Dr. Inga Jarosch and Dr. Tessa Schneeberger and sports that can be played on a Wii or with virtual reality. In our daily clinical practice, we frequently observe that patients with a heart rate of 120 on a stationary bike describe their perceived exertion as an 8. However, if they wear virtual reality glasses at the same heart rate, the perceived exertion is reduced by half, precisely because they are distracted. Alongside all the training, the subsequent relaxation should not be neglected, as it is essential for the recovery of both body and mind. Whether the individual chooses one of the various relaxation techniques or, for example, regenerates by listening to music, is irrelevant and individual. What is important is to regularly take this time for oneself.

My goal is for the patient and me to work together so well that one day he'll be able to train me effectively, gently pushing me aside because he knows how to best care for himself. Then, as a physiotherapist, I'll have done everything right and will be satisfied.

The goal is for all different patient groups to benefit from participating in pulmonary rehabilitation, both in terms of their physical performance and their ability to cope with the demands of daily life, thus enabling them to manage their condition independently. This promotes independence in daily life, the patient's self-esteem, and mobility. However, it is important to note that pulmonary rehabilitation is not competitive sport, but rather a specialized, dosed, and tailored training program for patients with lung problems, ranging from mild to severe lung disease.

Pulmonary exercise can still be prescribed by both the patient's general practitioner and a pulmonologist in private practice. It can also be prescribed by the German Federal or State Pension Insurance (Deutsche Rentenversicherung Bund or Landesversicherung) during rehabilitation at a specialized rehabilitation clinic – in this case, for a period of six months.

Pulmonary exercise may only be conducted by appropriately trained instructors who have completed the required advanced training and mandatory license renewal courses (every two or four years, depending on the federal state). The sports club providing the service must be a member of the disability sports association of the respective federal state.

Membership in a sports club can be beneficial for the long-term success of the therapy (continuing treatment even without a doctor's prescription or approval from the health insurance company), but it is not required for participation in pulmonary exercise programs – not even for insurance reasons. Participation in pulmonary exercise programs is covered by the doctor's prescription using form 56 or G 850. The situation is different if you are already a member of the club or wish to take advantage of other club offerings. In these cases, there should be no obstacle to membership.

A typical pulmonary exercise session lasts between 60 and 90 minutes and takes place once a week. Depending on the prescription and the number of groups or training sessions, participation several times a week is also possible – subject to prior agreement with the health insurance company, the doctor's prescription, and the institution providing the program.

Pulmonary exercise is definitely much more than the southern German 'schnaufen' and the standard German 'atmen'; it includes so much more:

Respiratory area

• Raising awareness and perception of breathing
• Learning / training in pursed-lip breathing (most important self-help technique)
• Breathing-relieving body positions (proper support is often forgotten!)
• Economization of breathing, especially under everyday stress (reduction of accessory respiratory muscles and deepening of breathing)
• the different breathing patterns (abdominal breathing, chest breathing, kidney breathing, lateral breathing)
• Raising awareness of the respiratory system
• Increased thoracic and shoulder mobility
• Improvement of respiratory muscle strength and mobilization of the diaphragm.
• Reduction of exertional dyspnea or the fear of shortness of breath during exertion
• Learning helpful and practical relaxation techniques

Training area:

• Maintaining and training endurance performance
• general muscle building
• Increased physical resilience
• Perception and shiftability of performance limits
• Muscle stretching
• Avoidance of protective behavior and joint stiffness,
• Coordination training, osteoporosis prophylaxis, polyneuropathy training

Training area:

• secretion mobilization
• Coughing techniques and cough discipline
• Nasal hygiene
• Emergency procedures, including those of your partner (or: how do I explain to my grandchild, for example, if I have problems on the stairs)
• Assistive device training (rollator, trolley, Flutter, Cornet, Acapella, Shaker etc.)
• Knowledge transfer about the disease and disease management
• Hygiene training relating to, for example, long-term oxygen therapy and everyday behavior
• Teaching of further self-help techniques
• Exchanging experiences with other affected individuals and building social contacts
• Reduction of exacerbation frequency (= phases of worsening condition)
• Strengthening / stabilizing the immune system.

Everyday life area:

• Avoidance of stressful breathing patterns during everyday stresses and situations (e.g. lifting, carrying, talking or arguing, walking or coughing, etc.)
• everyday-life-oriented training, e.g. in the form of an everyday-life training circuit (emptying the dishwasher, hanging up laundry, walker obstacle course, etc.)
• Correct and therefore effective, everyday-oriented stair climbing
• collaborative development of a feasible home program
• Accident and fall prevention (respiratory patients are unfortunately currently catching up in fall statistics due to incorrectly adjusted aids or unstable footwear)
• Training control under load

Many people need guidance, and the therapist often provides a familiar sense of security during exercise instruction and management, offering support and guidance. In addition, the psychological factor, the group dynamic (meeting and exercising with other participants), is a very important aspect of pulmonary exercise groups. Furthermore, there's the enjoyment of exercising with like-minded individuals and fellow sufferers, whom one often knows from years ago.

In pulmonary exercise classes, it is particularly important that the instructor offers variations in intensity during functional gymnastics, gait training, games, and everyday training circuits, for example, through different starting positions, additional tasks, etc. To control the intensity, the instructor, and therefore also the participants, have access to the Borg scale (e.g., using thumbs-up – horizontal – downwards), pulse oximetry, and, after extensive training of the participants, the recording of the 10-second respiratory rate.

outlook

1. Due to post- or long-term COVID-19, many patients have been added to the list in recent months, as they also benefit from regular training due to their symptoms (dyspnea, limitations in performance and activity, cough, altered breathing patterns, cognitive impairments, etc.). These patients are distributed among the various rehabilitation sports indication areas: internal medicine (pulmonary exercise), cardiology (cardiac exercise), neurology, psychiatry/psychosomatics, and orthopedics (functional training). A corresponding initial examination by a specialist physician, a doctor's prescription for rehabilitation sports, and approved cost coverage from the health insurance company are required.

The prescription can be issued based on ICD-10 codes U08.9 and U09.9 (conditions related to previous COVID-19 infection). ICD-10 codes U07.1 (presence or diagnosis of COVID-19 infection) and U10.9 (conditions related to current COVID-19 infection) are excluded due to the acute infectious situation or the acute need for treatment.

The introduction of special COVID-19 training groups in rehabilitation sports must be carefully considered, as this could lead to the stigmatization of participants. Furthermore, existing participants in rehabilitation sports groups would lose their support (e.g., in providing guidance on long-term oxygen therapy, coping with daily stress, self-help techniques, social integration, motivation, etc.). The exchange among those affected within the groups is more important than ever, also to support new and existing participants and the instructors. Despite the additional time required, the initial consultation forms the basis for the individual therapy and training plan. Instructors are advised to create questionnaires/checklists regarding symptoms (e.g., fatigue assessment) and to use a regular check-up questionnaire to monitor any changes in symptoms. To potentially change the rehabilitation sports training group to a different indication (cardiology, neurology, orthopedics, psychiatry) as a consequence after consultation with the treating physician.

2. Online lung exercise:

Even though health insurance companies have since discontinued coverage (temporary transitional arrangement), online pulmonary exercise has been available since 2020, with specific requirements for participation (doctor's prescription, detailed telephone consultation, functioning device and defined software requirements, cognitive ability to perform the exercises without tactile stimuli, participants must not be at risk of falling, insurance coverage for participation at home, etc.). Additional requirements included guidelines for implementation and quality assurance (valid accreditation of the exercise group, limited number of participants, consistent session times, safety instructions at the beginning of each session including exercises for home use, detailed documentation marked "Tele" regarding attendance, date, time, incidents, number of participants, etc.). Regulations concerning data protection, billing procedures, and the accreditation process were also included.
The feedback varied considerably across Germany:

PER: Driving is eliminated, people are more likely to take advantage of the offer than to do something alone, group dynamics are maintained, and a sense of security is preserved during the pandemic.

CONS: Not everyone could participate, there were technical problems, fear of "downloading" anything, error correction was difficult, participation was limited (talking to people in the background, mobile phone, telephone, front door), no carefree chatting like before, personal contact was missing, not all lung exercise content is available online.

3. Apps:

Digital training options are gaining increasing importance, not least due to the COVID-19 pandemic. They are increasingly complementing aftercare following rehabilitation, pulmonary exercise, or physiotherapy on days without appointments, offering a guided home program. In addition to providing information about the disease and its management, the apps primarily offer guided exercises at varying levels of exertion and intensity for strengthening, mobilization, and relaxation, sometimes accompanied by a virtual coach with real-time feedback. Reminder functions, various documentation tools, and questionnaires create a training record for overview and motivation.

Here are some examples of fitness apps:

• KAIA COPD (Kaia Health Software GmbH)
• Active with COPD (AstraZeneca)
• Walking the respiratory system together (AstraZeneca)

In general, however, therapeutically guided pulmonary exercise is worthwhile, as it is well-established. Exercise and physical activity in a group are enjoyable. However, there is still a need for more groups and instructors. And since current exercise recommendations aim for 30 minutes of physical activity per day, it is also important to incorporate what you learn in pulmonary exercise into a daily home routine and to be physically active every day, ideally documented in a training log.

And please always remember: every step, every stair step and every exercise is important for your own quality of life, (social) mobility and participation!

Air needs pressure differences to move.

During inhalation, the diaphragm contracts. This increases the space in the chest cavity, expanding the lungs. This allows oxygen-rich air (O2) to penetrate even the smallest airways and the alveoli (air sacs). The contraction of the muscles creates negative pressure in the chest cavity, extending all the way to the alveoli.
During exhalation, the diaphragm relaxes; the space for the lungs becomes smaller. A positive pressure is created, which forces the air enriched with carbon dioxide (CO2) out of the alveoli.

Respiratory muscle training and respiratory physiotherapy with aids:

The term "respiratory therapy measures" encompasses both respiratory muscle training, where forced breathing is used to increase strength and endurance, and respiratory physiotherapy, where prolonged breathing is used to reduce respiratory rate and lengthen breaths.

The training specifically targets the muscles and takes place via inhalation, while the physiotherapy specifically targets the airways and is performed via exhalation.

Exhalation needs just as much attention as inhalation.

The O2-CO2 exchange, also known as gas exchange, is vital for us. However, not only is oxygen intake extremely important, but so is the exhalation of CO2. Therefore, the "correct"„
Breathing is so important. Patients with respiratory illnesses, in particular, are often caught in a negative respiratory spiral these days. The fear of shortness of breath or pain leads them to inhale and exhale too quickly. In this case, it helps to lengthen the breathing cycle and/or reduce the respiratory rate. Ideally, exhalation should last twice as long as inhalation; this ensures sufficient CO2 is exhaled.

A healthy adult breathing at rest often takes only 10-15 breaths per minute. With a respiratory illness, it's common to inhale and exhale 30 to even 50 times per minute. Therefore, prolonged breathing exercises are helpful. Since this type of breathing doesn't involve muscle training, it's also considered a form of therapy. It's important to consider not only the duration of the O2-CO2 exchange but also the lung volume. If the diaphragm's contractile force is reduced, only a fraction of the necessary oxygen can be absorbed during inhalation. Accordingly, the diaphragm's contractile force plays another crucial role. This force can be trained through a forced breathing exercise with appropriate resistance, just like with other muscle groups. This is called respiratory training. This breathing exercise is the opposite of the prolonged maneuver.

Use of aids in respiratory therapy and breathing training

In addition to medication, it is beneficial for patients to support their bodies. Non-pharmacological measures include various options that can make breathing easier overall. These include, among others...
In addition to a healthy diet and pulmonary exercise, targeted breathing exercises are also beneficial – especially when using aids.1 Handheld devices (VRP1-Flutter, RC-Cornet® and RC-Cornet® PLUS, acapella, Choice, Pari-PEP-System, PEP mask), which generate positive expiratory pressure (PEP), are potentially able, on the one hand, to prevent or at least reduce bronchial obstructions caused by instability of the bronchial walls, and on the other hand, to loosen secretions from the bronchial walls through the overpressure and subsequent dilation of the bronchi, which can then be removed from the bronchial tree by huffing.

Oscillating therapy devices have proven effective in respiratory physiotherapy, which also aims to loosen secretions. Their vibrations help to loosen mucus, making it easier to cough up, and to open the airways, thus facilitating breathing.¹ The RC-Cornet®/RC-Cornet® PLUS is one such oscillating device, with the advantage of being usable regardless of the patient's position. These therapy devices are reimbursable with a corresponding diagnosis (and can be represcribed annually).

Likewise, there are a variety of breathing trainers on the market.2 Specifically for respiratory patients, e.g., Powerbreath Medic or the RC-FIT® CLASSIC, which combines breathing therapy with training as well as oscillation and relaxation.

In principle, every patient can independently carry out a program of respiratory therapy and breathing exercises at home. With or without aids.

1 Page 279, 6.2.6 Aids for secretion elimination
2 www.leichter-atmen.de/atemtherapiegeraete

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!

Lip brakes with pleasure

Under the heading of respiratory physiotherapy, the NVL COPD recommends self-help techniques such as pursed-lip breathing and breathing-easing body positions.

These self-help techniques can be put into practice effectively, permanently and enjoyably, with programs such as Singing for Lung Health (SLH) or in a choir of the breathless.

What has been scientifically proven about the benefits of singing for the lungs [2, 3]:

• Singing improves quality of life (physical component in the SF-36 questionnaire) and the function of the respiratory muscles.
• A recent study also demonstrates positive effects of a 10-week SLH program on the 6-minute walk distance.
• Furthermore, the choir members confirm that they find participation in the SLH program to be a pleasant leisure activity.
• No unpleasant side effects have been reported.
• A low dropout rate (only about one fifth) suggests high acceptance and satisfaction among participants.

Practical suggestion: In light of these proven positive effects, wouldn't it be an appealing idea for an Alpha-1 patient to look out for a choir of the breathless or to found a singing group for the lungs with other affected individuals?

Onto the parquet floor for more breath

Physical exercise is recommended as the first non-pharmacological measure in the National Care Guideline for COPD. Encouragingly, the guideline takes into account that patients often experience inhibitions and anxieties that prevent them from incorporating physical activity into their daily lives. These barriers "should be actively addressed and, if necessary, solutions sought.".

One possible suggestion for individually suitable physical activity and a corresponding attractive solution could be, for example, a playful offering such as creative dance (e.g., within the framework of pulmonary rehabilitation).

What advantages does a movement program combined with creative dance (PT+KT) offer compared to standard physiotherapy (PT)?

A recent randomized controlled trial [4] shows astonishing results:

• A movement program combined with creative dance (PT+KT) not only improves lung function and peripheral muscle strength, but also posture stability and sense of balance.
• Furthermore, improvements in physical performance (6-minute walk test), cognitive performance (MoCA score) and in the CAT (COPD Assessment Test) are more pronounced in the PT+KT group than in the standard physiotherapy group.
• The fact that no participant dropped out of the eight-week movement and dance program is interpreted by the authors as a sign of high motivation and enjoyment of this form of physical training.

As early as 2019, a research team [5] recommended, based on the promising results of a feasibility study on creative dance for COPD patients: „Let’s Boogie!“

Practical advice: Are there any arguments against a little dance now?

(As an aside: I've been told that the Alpha 1 anniversary information day in 2023 was practically a direct answer to my rhetorical question: Apparently, people danced until the floorboards shook! Too bad I couldn't join in.)

Sidney De Haan Research Center for Arts and Health

Hospitalnews.com

Live, write, breathe!

What does therapeutic writing have to do with the NVL COPD? While the so-called bibliotherapy (therapeutic reading and writing) is not explicitly mentioned under the heading of psychosocial interventions, reference is made to the positive effects of psychological methods on depressive symptoms and anxiety as comorbidities of COPD.

Since anxiety and depression are common in COPD patients and affect the course of the disease and the prognosis, the importance of psychological support services is obvious.

In cases of pronounced accompanying mental health conditions, specific therapeutic measures are of course necessary (specialized psychotherapy, psychosomatic medicine, psychiatry). However, the NVL COPD (National Guideline for COPD) points out that often low-threshold psychosocial interventions are sufficient (e.g., verbal interventions, relaxation techniques, stress management techniques).

Therapeutic writing represents an effective offering in the field of low-threshold psychosocial interventions.

As early as 1999, a randomized intervention study demonstrated the positive effect of therapeutic writing on lung function in stressed asthma patients [6].

In the Life of Breath project (2015 to 2020), Elspeth Penny and Alice Malpass worked with a letter to the breath. The participants in the group program showed surprisingly positive effects on their physical and mental quality of life [7].

I have slightly modified the letter-writing method as a self-help offer and presented it in the Alpha-1 Journal 2022/2.

Whether as a motivational aid in cases of general lack of motivation, as a distractor for anxieties, or as a calming tool for stress reduction: Therapeutic (letter) writing is an effective method – if you commit to it…

Leo E. Kröll, an Alpha-1 patient, has embraced the method and written an impressive letter to a historical figure:

Thank you so much, dear Leo E. Kröll, for the beautiful text and for your permission to reprint it with attribution. Perhaps your work will encourage other "alphas" to try one of the creative methods presented and entice them: into the choir, onto the dance floor, or to pick up a pen.

There may be other creative methods with positive effects on physical and mental well-being. A recent study on harmonica playing in COPD patients presents promising results [8]. Furthermore, there are no limits to the imagination when it comes to trying combined creative approaches.

The practical conclusion is: respiratory physiotherapy, physical training and psychosocial interventions are all the more effective the more they are done incidentally and with enjoyment!

Monika Tempel wishes you openness and a willingness to make a decisive and sustainable commitment.

Bibliography:

[1] https://www.leitlinien.de/themen/copd/2-auflage

[2] Fang, X., Qiao, Z., Yu, X., Tian, R., Liu, K., & Han, W. (2022). Effect of Singing on Symptoms in Stable COPD: A Systematic Review and Meta-Analysis. International Journal of Chronic Obstructive Pulmonary Disease, 2893-2904.

[3] Kaasgaard, M., Rasmussen, DB, Løkke, A., Vuust, P., Hilberg, O., & Bodtger, U. (2022). Physiological changes related to 10 weeks of singing for lung health in patients with COPD. BMJ Open Respiratory Research, 9(1), e001206.

[4] Kaya, M., Gurses, HN, Ucgun, H., & Okyaltirik, F. (2023). Effects of creative dance on functional capacity, pulmonary function, balance, and cognition in COPD patients: A randomized controlled trial. Heart & Lung, 58, 13-20.

[5] Wshah, A., Butler, S., Patterson, K., Goldstein, R., & Brooks, D. (2019). “Let's Boogie‘: Feasibility of a dance intervention in patients with chronic obstructive pulmonary disease. Journal of cardiopulmonary rehabilitation and prevention, 39(5), E14-E19.

[6] Smyth, JM, Stone, AA, Hurewitz, A., & Kaell, A. (1999). Effects of writing about stressful experiences on symptom reduction in patients with asthma or rheumatoid arthritis: A randomized trial. Jama, 281(14), 1304-1309.

[7] Penny, E., & Malpass, A. (2021). Dear Breath: using story structure to understand the value of letter writing for those living with breathlessness–a qualitative study. Arts & Health, 13(1), 20-34.

[8] Lewis, A., Conway, J., Middleton, J., Startup, CK, & Wyatt, J. (2022). Playing the harmonica with chronic obstructive pulmonary disease. A qualitative study. Chronic Respiratory Disease, 19, 14799731221083315.

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.

A 2020 study states that 7,000-8,000 steps per day have a health-promoting effect, regardless of intensity. However, this number of steps is often a real challenge for people with lung diseases.
Important for us: It's not about speed, but simply the number of steps. As is often the case, we want to emphasize the importance of movement and therefore offer you a program for a good start to the day. A helpful everyday tip! This program was devised by our pulmonary exercise trainer. Peddar (Peter Kukry).

What exactly is Shekitova?

Peter explains:
„"Who doesn't remember Anna Shekitova, the famous athlete of the 70s? (laughing) Of course, that's just a joke! Shekitova isn't a person, but a short exercise routine for every day! I do it myself every morning for a great start to the day. It's helpful if you warm up beforehand (stairs or walking in place). You'll definitely notice how you feel afterwards..."“

Here's how you can try it yourself:

  Sch EKITOVA

SchUlter circles backwards (with head and body rotation optional) Chest expansion, shoulder mobilization

Eelbows together and apart (elbows at shoulder height) Stretching of the posterior shoulder, stabilization of the cervical/thoracic spine

KNever lift (while bending the upper body forward) Mobilization of the lumbar spine, hip, and knee

Iintercostal (separating the ribs by bending left/right with little finger, making a hole in the ceiling) Stretching of the lateral trunk muscles

Treten (slowly bend knees until a right angle, unfold lower legs, pull toes in)  Stretching of the back of the leg, coordination

OBody twist (place leg behind you, fold elbow to the side and twist upper body in the opposite direction) Spinal mobility

VStretch your hands from your feet to the ceiling (upper body forward, thumbs pointing backward and upward) Full body front stretch, mobilization

ASwing your arms (swing arms in front of the body, raise arms to the sides with a twisting of the upper body)  Chest opening, breathing, mobilization

Peter himself: „Afterwards I always feel somehow fit for the day, it lasts about 7-10 minutes! So have fun with it, I recommend good music (funk/soul/jazz, it doesn't work with Schlager music…).“

You can find more exciting information and exercises from and with Peter on our website. YouTube channel. 

Photo credits: Evgeny Atamanenko/shutterstock.com