INFORMATION OVERLOAD? EXPLORING BARRIERS TO ASTHMA DIAGNOSIS AND CARE
The Next Breath Editorial Team
July 2020
UNDERSTANDING SEVERE ASTHMA
Unpacking the European Federation of Allergy and Airways Diseases Patients’ Associations’ (EFA) Active Patients ACCESS Care Report to discover how diagnosis and care can be improved for people living with asthma.
In light of the unprecedented and uncertain times faced by those living with chronic diseases, it has never been more critical to ensure the correct diagnosis and appropriate care of asthma. Yet research published by the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) suggests that diagnosis and care of people with asthma is inconsistent across Europe.
We sat down with Sofia Romagosa Vilarnau, Project and Engagement Officer at EFA, to discuss the results and how education and the effective sharing of information could help overcome barriers to better diagnosis and care for patients with asthma in Europe.
When asked about this, Sofia shared, “We found that there is an average three year wait for a first asthma diagnosis, which is far too long. This can have a dramatic impact on the lives of people with asthma, especially as delayed diagnosis and treatment may lead to a worsening of asthma severity.1”
Information as a Potential Roadblock
EFA’s research also found that factors linked to asthma disease management, such as the provision of educational materials and self-management plans, are not promoted readily enough by public authorities1 – and this could have an impact for people seeking out information about asthma to manage their disease.
Active Patients ACCESS Care Report: Fast Facts
- EFA surveyed 774 people in 7 European countries (Finland, France, Germany, Italy, Poland, Spain and United Kingdom).
- Participants waited an average of 3 years to get their first asthma diagnosis after experiencing their first symptoms.
- ¼ people with asthma, and ½ people with the severe asthma, needed emergency room treatment at least once in the last year.
- 70% said their healthcare professional was their main source of information.
When asked about this, Sofia shared, “We found that there is an average three year wait for a first asthma diagnosis, which is far too long. This can have a dramatic impact on the lives of people with asthma, especially as delayed diagnosis and treatment may lead to a worsening of asthma severity.1”
Active Patients ACCESS Care Report: Fast Facts
- EFA surveyed 774 people in 7 European countries (Finland, France, Germany, Italy, Poland, Spain and United Kingdom).
- Participants waited an average of 3 years to get their first asthma diagnosis after experiencing their first symptoms.
- ¼ people with asthma, and ½ people with the severe asthma, needed emergency room treatment at least once in the last year.
- 70% said their healthcare professional was their main source of information.
Information as a Potential Roadblock
EFA’s research also found that factors linked to asthma disease management, such as the provision of educational materials and self-management plans, are not promoted readily enough by public authorities1 – and this could have an impact for people seeking out information about asthma to manage their disease.
Targeted educational resources may be lacking but, in contrast, online information about asthma is plentiful. And while this information exists, it can be difficult for people to cut through the noise, sort out what information is credible, and determine how they should act on it to achieve better disease management. Sofia explained, “One problem we hear from patients is that there is so much information out there that it can become a bit overwhelming. Our report shows that healthcare providers remain the go-to source of trusted information on asthma but also uncovered how people with asthma are turning to the Internet for information second to their doctor.” This emphasizes the importance of ensuring reliable and accurate information about asthma is accessible to everyone, especially patients.
Sofia Romagosa Vilarnau, of the European Federation of Allergy and Airways Diseases Patients’ Associations’ (EFA).
The Importance of ‘Self-Management’
Sofia added, “Another significant finding was that people with asthma all too often rely on the emergency room, with one in four respondents needing to visit in the last year – a number that rises to one in two for people with the severe form of the disease.1” It is important for people to seek emergency care if they need it, but as Sofia explained, “This is also a worrying sign, because it could signal that people aren’t receiving the correct care or that they aren’t correctly adhering to their treatment, or a combination of both.”
There are several challenges to overcome in improving this. Sofia shared, “From an individual level, it’s important for people with asthma to ‘self-manage’ their disease. This can be done through an asthma management plan that guides a patient on how to react, for example, in an emergency situation, how to prevent risk factors and where to access information. We advocate for people to have regular check-ups with their healthcare professionals and to co-develop these plans. People should feel like they are equal partners with their doctor, so they can go to them and raise questions or concerns.”
When asked about the one thing people with asthma should take away from the report, she responded, “If you are struggling with your asthma management, you are not alone, and it is possible to live a good life. Patient education is also key. Accessing credible information on what causes asthma, understanding the available treatment options – including benefits and potential side-effects – as well as determining how you can best act on this information to achieve better disease management, are all important steps that you can take on this journey.”
The results from EFA’s Active Patients ACCESS Care Report are based on interviews with patients from Europe, however, many of the findings speak to worldwide trends on asthma. You can read EFA’s full report by clicking on the image below.
Additionally, check out our doctor-discussion guide to get the most out of your next check-up.
References:
- 1. EFA. Active Asthma and COPD Patients ACCESS Care Report. 2019. Available at: https://www.efanet.org/images/ShowLeadership/Report-Showleadership_FINAL.pd. Last accessed May 2020.
Date of Approval: June 2020 | MAT-GLB-2000319
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