Furthermore, studies on the burden of disease in alpha-1 antitrypsin deficiency show that the illness and care of a family member can lead to significant limitations in daily life for relatives. The intensive care required often results in a noticeable loss of flexibility in professional and social life. These changes can manifest in various areas of life: financial difficulties often arise due to reduced working hours or absences, while many relatives increasingly withdraw from their social circles. Participation in hobbies, travel, or other leisure activities is sometimes restricted, which can lead to loneliness.

This leads to a kind of "dual role" for family members, which significantly shapes their lives: As fellow sufferers, they often share many aspects of the altered life situation with the person with the illness. This close connection means they experience similar emotional and psychological burdens. Uncertainty about the course of the illness and the future accompanies them daily, while loneliness can arise from altered social contacts. At the same time, family members take on the demanding role of support providers, which involves diverse and complex tasks. They become important partners in gathering and disseminating information, help with symptom control, and, for example, recognize early signs of an exacerbation of the illness. A key task is to offer the affected person psychological relief and to motivate and activate them. Furthermore, in later stages of the illness, they often also take on tasks in basic and therapeutic care, which can be very demanding both physically and emotionally (Chronic Illness as a We-Disease; Horn et al., 2023).

For this reason, a corresponding, joint, and active approach to coping with the illness is of crucial importance. A key component of this joint approach is the mobilization of social and emotional resources. Seeking and giving advice, connecting with other affected individuals and their families, and experiencing a sense of belonging are important basic psychological needs that should be actively supported.

Of particular note is a frequently observed phenomenon: protective/emotional buffering, a widespread coping strategy in the context of jointly managing illness. Here, partners attempt to suppress their own needs, worries, anxieties, and moods from one another in order to avoid placing an additional burden on each other. Although this mutual protective behavior can provide short-term relief, it often has negative long-term effects on communication and relationship quality (Langer et al., 2009).

That's precisely why forums for shared support among family members at patient events like the one in Bad Wildungen are so valuable and important. They offer a safe space where family members can openly exchange information without feeling like they're placing an additional burden on their partner. This can then potentially provide a basis for further discussions with the affected partners.

Horn, AB, Zimmerli, L., Maercker, A., & Holzer, BM (2023). The worse we feel, the more intensively we need to stick together: A qualitative study of couples' emotional co-regulation of the challenge of multimorbidity. Frontiers in Psychology, 14, 1213927. https://doi.org/10.3389/fpsyg.2023.1213927

Langer, S. L., Brown, J. D., & Syrjala, K. L. (2009). Intrapersonal and interpersonal consequences of protective buffering among cancer patients and caregivers. Cancer, 115(S18), 4311–4325. https://doi.org/10.1002/cncr.24586

Miravitlles, M., Herepath, M., Priyendu, A., Sharma, S., Vilchez, T., Vit, O., Haensel, M., Lepage, V., Gens, H., & Greu lich, T. (2022). Disease burden associated with alpha-1 antitrypsin deficiency: Systematic and structured literature reviews. European Respiratory Review, 31(163), 210262. https://doi.org/10.1183/16000617.0262-2021

For dealing with those affected and for therapy options, this means that mental illnesses must be considered, monitored, and treated, as the impact of psychological stress can be very high. Therefore, it is particularly important for therapists to take mental illnesses seriously. The most common mental illnesses are affective disorders, especially depression, and anxiety disorders.

When is someone diagnosed with depression?

If a phase lasting at least two weeks with

• intense depressed mood, negative thinking, loss of joy
• Depression is characterized by a marked loss of interest, severe loss of motivation, and exhaustion, with at least two of these three criteria being met. Further symptoms that exacerbate depression include low self-esteem, feelings of guilt, sleep or appetite problems, negative rumination, and weariness of life.

When is someone considered to have an anxiety disorder?

• An exaggerated fear response in a situation that is already frightening.
• Unfounded fear of situations that would not frighten most others, often characterized by physical reactions such as rapid heartbeat, shortness of breath, trembling, sweating.
• Often very restrictive in everyday life due to avoidance behavior and intensive preoccupation with fears.
• Common forms of anxiety disorders: panic attacks, phobias, generalized anxiety.

Avoiding anxiety-provoking situations can create a vicious cycle. The more often you ignore them, the more likely anxiety disorders are to become chronic.

Both mental illnesses (depression and anxiety disorders) have a significant impact on physical health. In addition to reduced quality of life, studies show that anxiety disorders and depression contribute to more frequent and longer hospital stays and a poorer prognosis.

Studies have shown that people with manifest mental health problems often have difficulty adhering to therapy, exhibit less healthy behaviors and lower activity levels, and receive less social support. Furthermore, there are hypotheses that possible biological processes such as inflammatory responses, overstimulation of the stress axis, and autonomic dysregulation (e.g., reduced heart rate variability) may be exacerbated.

Several studies of lung patients show that there are three key pillars for supporting mental health. The first is patient education, which can significantly reduce anxiety and depression. Continuing education is a crucial component of coping with illness and has been proven to have an antidepressant effect.
The second pillar is psychotherapy, in which, for example, gradual activity is combined with relaxation exercises during rest periods, with the aim of, for example, "unlearning" fears.

Specific breathing and mindfulness training, as well as forms of movement, constitute the demonstrably helpful third major pillar. Here, performance and quality of life can be improved, and anxiety and depression reduced.
It is well known that good results are achieved during rehabilitation stays in which the three pillars are combined and trained.

Psychosomatic interactions in lung diseases

The word 'psychosomatic' is composed of the terms soul and body and affects every human being, because we are all in psychosomatic interactions, such as fear making our heart beat faster.

In psychosomatic medicine, one always deals with interactions. Using the Breathing-Thinking-Functioning model, developed in Cambridge, UK, in 2017, various interactions regarding breathing and shortness of breath are described in the form of several vicious cycles. The first vicious cycle is the physical process of breathing itself, because when we experience shortness of breath, we intuitively tend towards inefficient, rapid, and hyperventilating breathing. This leads us to fall into increasingly inefficient breathing patterns that quickly exhaust us. Helpful measures here include breathing techniques, training of the respiratory muscles, as well as handheld fans to calm breathing on a sensory level, or even non-invasive ventilation.

The second vicious cycle, which exacerbates shortness of breath, is described psychologically, as it addresses the focus on the symptom, which often intensifies it and, in combination with catastrophic thoughts, can trigger anxiety and even panic attacks. Currently, cognitive behavioral therapy, with its three pillars already described, offers the strongest evidence for treating this interaction.

The third vicious cycle concerns functional activity, because when we experience shortness of breath, we may become increasingly hesitant to be active and exert ourselves. This can lead to muscle atrophy, which, due to increasing immobility, in turn leads to a greater need for assistance. Supportive measures here can include pulmonary rehabilitation, pacing (gradually approaching the exertion limit), or walking aids to support mobility and activity.

How can one deal with stressful issues?

The speaker conducted a survey on quality of life and mental health in various pulmonary wards, interviewing 62 patients with advanced COPD. The patients completed screening questionnaires on psychological distress and quality of life, as well as the Freiburg Questionnaire on coping with the illness. In addition, they were asked two open-ended questions in an interview about their individual burdens and how they dealt with the disease.

The study revealed that despite the serious illness, one-third (20 patients) reported a good quality of life and no psychological symptoms. The much larger group of 42 patients felt significantly burdened by the illness. A comparison of the two groups showed that the burdened group exhibited significantly higher scores in the categories of 'depressive coping' and 'trivialization and wishful thinking'. This group described themselves as more prone to letting themselves go, lacking a positive outlook, and predominantly focused on their limitations. At the same time, they tended to downplay the illness to avoid confronting it.

The positively minded third displayed a more grateful attitude. Instead of thinking, "Nothing works anymore," these patients tended to focus on, "What else is possible?" In this way, they contributed to actively coping, were generally more stress-resistant, more positive, and more motivated to make the best of their respective situations.

It was striking that not a single one of the psychologically stable patients reported experiencing distress due to social reasons. This includes feeling alone and isolated, being stigmatized, or being a burden to others. In contrast, a quarter of those experiencing psychological distress reported, for example, finding the nasal tube disturbing or living almost unreachable, as if in a bubble.

The role of family members

What role do family members play in coping with the illness? How high is their stress and burden? It is important to recognize that those affected and their families stand together as a team, because family members are always affected by the chronic illness. Loss of flexibility and opportunities in professional and social life, financial difficulties, loneliness, and reduced participation can trigger the same worries and fears in family members and thus have serious psychological consequences. Furthermore, feelings of guilt and anxiety for future generations can make life even more difficult.

A shared and proactive approach to coping with illness can be the path to a significantly improved quality of life. Actively and consciously managing the illness, as well as mobilizing social and emotional resources, is helpful. People who feel a sense of belonging and value, who seek information and exchange experiences with one another, and who learn to manage their problems with the help of psychotherapeutic interventions, can actively contribute to their own psychological stability and experience a higher quality of life. It's a goal worth striving for.

Summary: Gabi Niethammer

Triggers for claustrophobic fears

For some of you, dear readers, certain medical examinations (such as body plethysmography or magnetic resonance imaging) may be like a nightmare. The mere thought of having to go "into the tube" (i.e., into an MRI or CT scanner) again soon can trigger panic. And despite the completely transparent plastic walls, the mere thought of the lung function testing booth can trigger the familiar panic symptoms in some patients: chest tightness, shortness of breath, trembling, sweating, palpitations, dizziness, or a feeling of weakness.

This triggering of symptoms, even through anticipated situations imagined only in thought, is also described by "researchers of shortness of breath" in relation to anxieties associated with shortness of breath. The phenomenon is likely based on so-called priors: past experiences (priors) create expectations in the brain, which are updated by the respective information. In lung diseases, a connection can thus be learned between key stimuli that trigger shortness of breath (e.g., stairs, excitement) and subjective shortness of breath, as well as the associated anxiety.

Patients with lung diseases are usually familiar with both: experiences of shortness of breath in everyday life and experiences of shortness of breath during medical examinations or treatments. Furthermore, assuming that the brains of lung patients are particularly sensitive to fears of shortness of breath, this may explain their susceptibility to claustrophobic anxieties.

Speculation? Perhaps (still) – but presumably less and less unlikely with increasing research!

Treatment and prognosis for claustrophobia

Anxiety disorders (including claustrophobia) are generally considered highly treatable, with a high success rate (up to 80 percent). Treatment involves psychotherapy (primarily cognitive behavioral therapy) and medication (primarily antidepressants, antipsychotics, and, in emergencies, anxiolytics).

Does the prognosis look just as favorable for lung patients with claustrophobic anxieties?

Firstly, absolutely: because simply knowing that claustrophobia is a widespread phenomenon (even among people with healthy lungs) can contribute to normalization.

Secondly, the lives of patients with lung diseases do not always correspond to those of the general population. People with lung diseases typically experience shortness of breath more frequently than those with healthy lungs, and they are more likely to undergo examinations and treatments in cubicles and tubes.

It is therefore by no means dishonorable for patients to request a mild sedative before an MRI scan, for example. (They are in good company: According to one study, approximately 14 percent of patients require medication to calm their nerves before an MRI scan due to anxiety.) Alternatively, affected lung patients can try to schedule appointments at a center with "open" MRI systems, which are generally better tolerated.

Anyone who wants to confront their claustrophobic fears in everyday life (for example, before going to the cinema, using an elevator, or driving through a tunnel) should keep the basic principles for dealing with fears in mind:

• Those who flee from fear will be overtaken by it.
• The possibilities for Fear confrontation in a virtual reality This opens up new perspectives, especially for lung patients with claustrophobia.
• Less stress means less shortness of breath and therefore, generally, a lower susceptibility to claustrophobic anxieties. All opportunities for stress reduction and relaxation should therefore be utilized.

If you have any comments or questions about this article, please feel free to contact me.

Lungs and Psyche: Respiratory and Lung Diseases. Edition: M. Tempel, Regensburg. Dustri Verlag, Volume 50, Number 2, February 2024. www.dustri.de

Available for purchase from Dustri Online Services.

Being active and avoiding being complacent: it's all about the mix!

Shortness of breath as a sensible "avoidance mechanism" protects you from the real danger of being overwhelmed.

Shortness of breath when "thinking about physical exertion" is the result of an anxiety-triggered and anxiety-intensifying learned association (prior). An unpleasant experience has created connections in your brain between potential trigger situations, anxiety, and the experience of shortness of breath. Unfortunately, these are often situations that must be practiced to maintain your everyday abilities (ADLs).

How can appropriate activity be implemented in practice to address shortness of breath anxiety?

The good news: Studies show it's possible! The even better news: You can only win with a measured approach to ADL training – namely, the following:

• a feeling of control
• less shortness of breath when "thinking about it"„
• less fear in the specific situation

How is this achieved? Through techniques that increase the feeling of control by avoiding shortness of breath and thereby apparently contribute to a "untangling" of learned connections in the brain.

Which adapted avoidance patterns do the techniques of controlled training utilize? Presumably, the following techniques lead to an increased sense of control and thus to reduced anxiety related to shortness of breath:

• Distancing (through observer practice in the situation and in the lead-up to the training)
• Escape in case of real deterioration (e.g., in case of impending exacerbation – for this you should master the discrimination exercise: Is it fear or is it my lungs?)
• Proactive avoidance through proactive planning of the units of the dosed ADL training (e.g. climbing stairs at an individual pace and using resistance breathing)
• Retrospective safety behavior through follow-up (e.g., "speech test": Can I hold a conversation during and after the exercise session without shortness of breath?)

But beware: Belief in miracles is not (!) an adapted form of avoidance!

You've probably already realized this by now. Nevertheless, let me reiterate: there are different types of avoidance. Avoidance behavior isn't always counterproductive. However, the desire for problems to magically disappear "as if by a miracle" is counterproductive.

Because only regular ADL training will gradually make you a master of the levels!

What to do when "everything" doesn't help?

Sometimes non-pharmacological approaches reach their limits when dealing with anxiety related to shortness of breath during physical activity.

Pulmonologists then recommend, among other things, opioids to influence the perception of shortness of breath. Opioids primarily affect automatic respiratory regulation (via the brainstem).
However, more recent studies suggest that opioids also affect the interplay between learned associations (priors) and anticipated shortness of breath.

In experimental settings with healthy subjects, they reduce the perception of the unpleasantness of shortness of breath. This apparently occurs through the activation of the body's own opioid system (usually referred to as "endorphins").

Admittedly, careful consideration is required when using opioids to treat shortness of breath. Nevertheless, this very specific aspect of influencing learned associations deserves further investigation. Promising results could potentially allow for more targeted interventions to benefit patients with shortness of breath and anxiety about physical activity.

Further reading for those interested

On the blog of my website „Psychopneumologie.de“ there are two posts that deal more intensively with the topic of „shortness of breath anxiety“ in a generally understandable way:
Psychopneumology Lexicon: A for Shortness of Breath - Anxiety
Shortness of breath anxiety in COPD: A new mind-body intervention targets breathing patterns and breath awareness.

The following articles are unfortunately only available in English.
Language available:

• Hanania, NA, & O'Donnell, DE (2019). Activity-related dyspnea in chronic obstructive pulmonary
  disease: physical and psychological consequences, unmet needs, and future directions. International journal of chronic obstructive pulmonary disease,
  14, 1127.
• Herigstad, M., Faull, OK, Hayen, A., Evans, E., Hardinge, FM, Wiech, K., & Pattinson, KT (2017). Treating breathlessness via the brain: changes in brain activity over a course of pulmonary rehabilitation. European Respiratory Journal, 50(3).
• Hayen, A., Wanigasekera, V., Faull, OK, Campbell, SF, Garry, PS, Raby, SJ, ... & Pattinson, KT (2017). Opioid suppression of conditioned anticipatory brain responses to breathlessness. Neuroimage, 150, 383-394.

I wish all members of the Alpha1 community strength and confidence to overcome the numerous challenges in these very special times.

Guiding question 3: Which protective factors can be used in connection with COVID anxiety?

The Austrian study already indicated a possible protective effect of a stable partnership against COVID anxiety. Other studies confirm this finding and identify further protective factors against COVID anxiety.

These findings lead to the following two guiding questions for practice.

Key question 4: Can COVID anxiety be measured? 

In fact, several useful and reliable instruments for measuring COVID anxiety already exist. They were mostly developed based on questionnaires for general health anxiety. The best-known questionnaires and scales are:

• Fear of COVID-19 Scale (FCV-19S; Ahorsu et al., 2020)
• COVID stress scales (CSS; Taylor et al., 2020)
• Fear of Coronavirus Questionnaire (FCQ; Mertens et al., 2020)
• Newly developed scale (NEW; based on Mertens et al., 2020).

The development and testing of these four measurement instruments reveal the many facets of COVID anxiety and their interrelationships. Each questionnaire places different emphases. To effectively treat (or even prevent from developing in the first place) such a complex disorder as COVID anxiety, researchers can strategically use the different questionnaires with their respective focuses. This allows them to assess individual anxieties and psychological burdens and develop the most tailored interventions possible for those affected.

Guiding question 5: Which services can effectively prevent or alleviate COVID anxiety? 

In their search for helpful interventions against COVID anxiety, the researchers start with observations such as the following:

• Not everyone develops COVID anxiety and related mental disorders.
• On the contrary: The majority demonstrates adequate psychological resilience in the face of health threats posed by a virus that is still poorly understood.
• Study results suggest that this resilience could be based on constellations such as optimism, mindfulness, and resilience.

This provided the researchers with a lead. And indeed, they were able to demonstrate that optimism, mindfulness, and resilience significantly influence the relationship between COVID anxiety and mental health problems. Depressive symptoms play a key role in this and should therefore receive special attention.

The studies provide starting points for the development of programs to combat COVID anxiety:

• Promote optimism!
• Practice mindfulness!
• Strengthen resilience!

These approaches are considered helpful for both patients affected by COVID anxiety and their relatives. Demonstrably effective programs for strengthening optimism, mindfulness, and resilience exist for various settings (individual or group; in person or online).