Author
Monika Tempel, Scientific Advisor, Alpha1 Germany eV.
So that people with alpha-1 antitrypsin deficiency don't get lost in the information jungle.
People with alpha-1 antitrypsin deficiency (AATD) face significant challenges in coping with their illness and navigating the healthcare system. Day after day, they must find, understand, evaluate, and apply health-related information. How can these skills and abilities be specifically fostered and strengthened?
Health literacy – what exactly is it?
The starting point is challenging: On the one hand, patients are expected to communicate with healthcare professionals on an equal footing and make joint treatment decisions. On the other hand, they are finding it increasingly difficult to navigate the ever-denser and more confusing jungle of healthcare structures and information. Digitalization makes many things more accessible. At the same time, over-, under-, or inappropriate care is a risk due to overly complex information and services. Health literacy is therefore becoming increasingly important in order to be able to make responsible decisions about the course of an illness together with healthcare providers.
What is meant by the term "health literacy"?
A generally accepted definition of health literacy is roughly as follows: "Health literacy encompasses the knowledge, motivation, and skills of people to access relevant health information."
- to find,
- to understand,
- to assess,
- to apply,
to be able to make judgments and decisions in everyday life regarding coping with illness, preventing illness and promoting health, which maintain or improve their quality of life throughout their entire lifespan.“ (according to Sørensen K et al, 2012)
This definition is quite something! It makes clear: health literacy is a complex network of the individual's abilities and skills in conjunction with the demands and complexity of their living environment.
Given this situation, how can health literacy be specifically strengthened?
The most important areas for improving health literacy are the personal living environment and everyday life. These areas are particularly crucial for people living with alpha-1 antitrypsin deficiency (AATD). This chronic (lung) disease places high demands on health literacy and self-management. The course of the disease varies from person to person and changes over time. It is like a rollercoaster ride with varying degrees of symptoms and limitations, which also intensify and become more frequent as the disease progresses. People with AATD therefore need care that is tailored to their individual situation throughout the entire course of their illness.
The changing role of the patient also requires more active participation in treatment and more intensive engagement in coping with the illness. This calls for programs to strengthen health literacy, such as:
- Programs to promote self-management (DMP programs, non-disease-specific offers),
- Qualification and use of self-help structures (SHG, patient organizations such as Alpha1 Germany),
- Offers to improve the communication skills of patients and relatives.
Is acquiring health literacy just a challenge?
Up to this point, it sounds as if strengthening health literacy means nothing but a lot of work and effort for patients. However, the other side of the coin is easily overlooked. Strengthened health literacy transforms those affected into active participants in their own health! It fosters a sense of self-efficacy. This sense of self-efficacy, in turn, has positive effects on the course of an illness. Numerous studies confirm this. Therefore, strengthening health literacy is a worthwhile shared goal for patients, their supporters, and healthcare providers.
This concludes the general discussion on the topic of "health literacy"—more in-depth information can be found in the National Action Plan for Health Literacy (nap-gesundheitskompetenz, 2020). This plan also provides general guidance on strengthening health literacy.
What exactly does strengthening health literacy look like in relation to the topic of "Alpha-1 and the psyche"?
Let's take a specific case as an example: What does a health-literate approach mean when dealing with "anxiety in Alpha-1"? The following challenges arise:
- Where can I find reliable information?
- How can I understand and evaluate the information I have found?
- How do I apply this information in my everyday life?
I will use the question "Anxieties in Alpha-1" as an example to illustrate one possible approach in light of these three challenges, step by step.
1. Where can I find reliable information?
Even healthcare professionals struggle to navigate the information jungle. An Alpha-1 patient certainly can't possibly grasp or evaluate the latest studies. And they don't need to!
There are working groups whose task is to evaluate and classify studies on specific topics according to their value. The results of these working groups are usually summarized in:
- Position papers,
- Guidelines,
- evidence-based reviews (systematic reviews).
Unfortunately, our search for reliable information on the topic of "anxiety in Alpha-1" has not yet yielded any guidelines. However, the following documents are available: a DA-CH expert statement (Greulich T et al, 2020) and a review (Beiko T & Strange C, 2019) – both in English.
The expert statement contains nine key recommendations for the diagnosis and treatment of alpha-1 antitrypsin deficiency. Unfortunately, it lacks information on the psychological aspects of the condition. English-speaking readers (or anyone familiar with translation software such as DeepL!) will find helpful information in the review article by Beiko T and Strange C ("Anxiety and Depression in Patients with Alpha-1 Antitrypsin Deficiency: Current Findings and Impact on Quality of Life"). For example, it includes a reference to the Big Fat Reference Guide from AlphaNet.org (more on this later).
In German translation, the most important points regarding "anxiety in Alpha-1" in the review article (by Beiko T and Strange C) are essentially as follows:
Treatment of anxiety and depression at AATM
„"The course of anxiety and depression in AAD varies depending on the severity of the illness, its progression, the availability of family support, and available resources. Understandably, some of these factors are fluid and can change unintentionally, affecting either anxiety or depression. According to most studies, anxiety and depression are overlooked in AAD patients. Even when diagnosed, treatment is sometimes neglected for various reasons. The Big Fat Reference Guide (BFRG) is a web resource for individuals and families with AAD, written by people living with AAD. The BFRG website has a chapter on 'Coping with Alpha-1,' which addresses the stress of diagnosis and the stress during the illness process. The outlined recommendations provide individuals with some tools to achieve good emotional well-being. The 2019 GOLD COPD guidelines emphasize that both anxiety and depression are common comorbidities in COPD, leading to a poor prognosis." In ordinary COPD, specific risk factors for anxiety and depression have been identified: younger age, female sex, smoking status, low FEV1, the presence of cough, a higher SGRQ score, and a history of cardiovascular disease. Importantly, GOLD states that both COPD and anxiety/depression should be treated as usual.„
If we follow the advice in the final sentence („that both COPD and anxiety/depression should be treated as usual.“), we come across a Cochrane Review (systematic review) on the topic of „Psychotherapy for the treatment of anxiety in COPD“ (Cochrane Database of Systematic Reviews, 2017).
The German translation of the summary of this review, in plain language, reads approximately as follows: „Psychotherapy for the treatment of anxiety in chronic obstructive pulmonary disease (chronic bronchitis and emphysema)“.
Why is this overview important?
Chronic obstructive pulmonary disease (COPD) is commonly referred to as emphysema and chronic bronchitis. People with COPD are more likely to experience anxiety compared to the general population. Anxiety symptoms affect various aspects of daily life, including quality of life and the ability to perform physical activities. Psychological therapies are used in clinical practice to treat these symptoms. However, there is limited evidence to support the effectiveness of these methods.
Who will find this overview interesting?
Healthcare professionals and people with emphysema and underlying anxiety and panic disorders.
What questions should this review answer?
What is currently known about psychological therapies for treating anxiety in people with COPD who also have coexisting anxiety?
Which studies were included in the investigation?
Randomized controlled trials (research studies in which participants are randomly assigned to either the intervention being tested or a control group).
What do the results of the review tell us?
This systematic review identified three studies with a total of 319 participants with COPD and co-occurring anxiety. All three studies investigated psychotherapy (CBT – cognitive behavioral therapy) with a co-intervention compared to co-intervention alone. There was limited evidence of some improvement in anxiety reduction and quality of life in the psychotherapy group. It is important to note that the overall quality of evidence was low, and therefore further research is needed to increase our confidence in this effect. One limitation of this review is that all three included studies recruited participants with both anxiety and depression, not just anxiety, which could confound the results.
What should happen next?
Further research is needed to determine whether this therapy reduces the number of hospital admissions and the length of hospital stays, as this has not been assessed in the current evidence base. Larger, longer-term studies are required. At least two further clinical trials addressing this question are currently underway. Once published, their findings could either increase or decrease our confidence in the results of this review.
The very cautiously worded results of this review are due to the high quality standards of the Cochrane Reviews for the studies examined. However, the recommendations for anxiety treatment in COPD are at least presented in reader-friendly language!
Speaking of "reader-friendly language": The topic of "anxiety in COPD" thankfully appears several times in the National Care Guideline COPD (NVL COPD, 2021), particularly in detail: in the chapter on the diagnosis of comorbidities – point 2.5.2 Anxiety and Depression, and in the chapter on non-pharmacological therapy – point 4.7 Psychosocial Interventions.
These texts are not exactly reader-friendly. For the time being, COPD or Alpha-1 patients with anxiety can only rely on the comforting reference to the patient information leaflets in the appendix of the treatment guideline.
2. How do I understand the information?
This is a real challenge! It's hardly enjoyable to read a text with reliable information when you unfortunately have to look up every second or third word in a medical dictionary. To avoid this frustration, it's always worth searching for patient guidelines and patient information. These documents present the content of treatment guidelines or evidence-based reviews in a patient-oriented manner.
For our topic "Anxiety in Alpha-1," the COPD National Guideline (NVL COPD) includes a patient information sheet in the appendix entitled "COPD – Why everyday and psychological stresses can become important." Clicking on the patient information sheet will take you to the following website of the German Medical Association's Center for Quality in Medicine (ÄZQ): Patienten-Information.de.
This website continuously provides reliable information on important patient concerns. Fortunately, it offers the additional functions "Easy Language" and "Search" in its website menu. Try it out: Go to the homepage of Patienten-Information.de and enter "COPD" or "anxiety" in the search function!
Search results for "anxiety in COPD" are currently not very productive. Even the link to Gesundheitsinformation.de (Health Information) yields no specific content for the search terms "COPD" and "anxiety," but does provide general information on pulmonary rehabilitation and disease management programs (DMPs, structured treatment programs).
Anyone wishing to delve deeper into information about anxieties and anxiety disorders in general (i.e., not specifically about Alpha-1) will find the following information source very helpful: Stiftung Gesundheitswissen (Health Knowledge Foundation).
This website presents evidence-based and patient-friendly information, clearly conveyed through short explanatory videos and numerous graphics. Following the links under "Forms of Anxiety Disorders" leads to the page "Agoraphobia and Panic Disorders." Here, under the heading "Treatment," you will find, among other things, detailed information on online therapies for anxiety disorders.
3. How do I implement this information in my everyday life?
This question usually only arises once the initial information search has yielded concrete instructions for action. This is rather the exception! Most documents only contain general references to possible treatment approaches.
So, what happens next?
For the interested Alpha-1 patient, this marks the start of the second round of information searching. And this time it gets really tricky – even with keyword combinations like "Alpha-1 AND anxiety AND self-help AND course AND online." Relevant hits: none! Only with persistence and a good dose of luck will internet users stumble upon programs or materials that incorporate elements of demonstrably effective therapeutic approaches for Alpha-1 or COPD patients with anxiety (cognitive behavioral therapy, mind-body medicine).
Examples of special offers for „anxiety in COPD“ should be mentioned in this context:
- ABC – living a more active and conscious life with COPD
- More air – COPD and mental health
Or online self-help for anxiety disorders (in general):
- velibra
- invirto
- Mindable Health
These so-called Digital Health Applications (DiGA) are prescribable. The costs for selected apps are covered by statutory health insurance.
Those who prefer printed self-help materials will find what they need on the DASH (German Anxiety Relief) website. The DASH Workbook (workbook and worksheets available for free download) contains information and exercises to help you better understand your anxiety and grow from it. Here is a sample exercise:
„"What do you think about your fear?"
- Does it activate you?
- Does it restrict you?
- What does it protect you from?
- What is stopping you?
- How long have you been feeling this fear?“
The websites listed contain a wealth of reliable recommendations and proven exercises. They're just waiting for you to take the first step towards implementation!
This was an exemplary session to strengthen health literacy on the topic of "anxiety in Alpha-1".
Many other questions are conceivable, for example:
- Anxiety during shortness of breath
- Living with LTOT and NIV
- Depression in COPD
- Motivation for physical activity
- Fear of the (lung) disease progressing
- and many other important questions…
From the realization that there are likely as many questions as there are affected patients, an idea was born: a guide through the information jungle on the topic of "lungs and mind," to strengthen the health literacy of people with chronic lung diseases. The concept for this guide is nearing completion. The guide focuses entirely on supporting patients with chronic lung diseases and their caregivers step by step in their search for reliable information and proven resources on the topic of "lungs and mind." This includes not only presenting general approaches to strengthening health literacy but also compiling all available trustworthy information from the field of "psychopneumology" based on specific questions and needs. Because these findings and recommendations can change rapidly, the content of the "Health Information – Lungs and Mind" guide will be continuously revised and updated.
This is where you, as those affected, come in. Before the idea is implemented in various formats (print, online), we want to ensure that everything has been considered. Therefore, we ask you to please take a few minutes to answer this question: What are your two most important questions regarding "Health Information – Lungs and Mental Health" that absolutely must be addressed in this resource?
