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.

Image shows a young lady sitting in a chair Image shows a young lady sitting in a chair

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.

Image shows the front cover of an EFA report featuring a lighthouse and birds Image shows the front cover of an EFA report featuring a lighthouse and birds

Additionally, check out our doctor-discussion guide to get the most out of your next check-up.

References:

  1. 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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Tammy was diagnosed with asthma as an infant. Throughout her childhood, her asthma was severe but under control with help from her doctor, who prescribed an inhaler and other medicines.

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ARE THESE 5 MYTHS PREVENTING YOU FROM ASTHMA CONTROL?

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People living with asthma often overestimate their level of control. That’s why we’ve looked at five common myths about asthma and unpacked the facts.

LOOKING INSIDE: TEST YOUR KNOWLEDGE OF TYPE 2 INFLAMMATION IN ASTHMA

The Next Breath Editorial Team

9/2/2020 12:00:00 AM

9/2/2020 12:00:00 AM

Explore these facts about type 2 inflammation – a contributor to asthma – and then test your knowledge. What score will you get?

Amit’s Story: Finding a Deeper Meaning with Severe Asthma

The Next Breath Editorial Team

8/4/2020 12:00:00 AM

8/4/2020 12:00:00 AM

Severe asthma has had a big impact on Amit’s life. Now that she has found a better level of control, its inspired a new career path.

INFORMATION OVERLOAD? EXPLORING BARRIERS TO ASTHMA DIAGNOSIS AND CARE

The Next Breath Editorial Team

7/7/2020 12:00:00 AM

7/7/2020 12:00:00 AM

Unpacking EFA’s Active Patients ACCESS Care Report to discover how diagnosis and care can be improved for people living with asthma.

Harnessing the Power Of The Asthma Experience

The Next Breath Editorial Team

6/3/2020 12:00:00 AM

6/3/2020 12:00:00 AM

Learn how the research community taps into the asthma experience of those who know it best – people with asthma – and how these insights help advance care.

What’s Your Asthma Personality? Take This Quiz to Find Out!

The Next Breath Editorial Team

4/28/2020 12:00:00 AM

4/28/2020 12:00:00 AM

Everyone’s asthma is unique, but people can have similar experiences. Take this 5-question quiz to find out your “asthma personality” and resources to explore today.

LET’S TALK ABOUT ASTHMA: TIPS FOR STARTING A MEANINGFUL CONVERSATION WITH FAMILY AND FRIENDS

The Next Breath Editorial Team

3/31/2020 12:00:00 AM

3/31/2020 12:00:00 AM

Life with uncontrolled persistent asthma can be tough, but so can talking about it! That’s why we’ve gathered these tips to help you start a meaningful conversation with family and friends.

A Checklist to Help You Better Understand Your Asthma

The Next Breath Editorial Team

2/17/2020 12:00:00 AM

2/17/2020 12:00:00 AM

Meet Dr. Maureen George, the behavioral scientist who helped develop a simple, but powerful description of severe asthma and checklist that are helping people understand and talk about their disease.

YOU MAY NOT BE “SICK,” BUT TALK WITH YOUR DOCTOR ABOUT BETTER ASTHMA CONTROL

The Next Breath Editorial Team

1/1/2020 12:00:00 AM

1/1/2020 12:00:00 AM

Better asthma control is possible. Use these tips to jump-start a conversation with your doctor about addressing your symptoms.

Type 2 Inflammation: An Often Overlooked Contributor to Asthma

The Next Breath Editorial Team

12/5/2019 12:00:00 AM

12/5/2019 12:00:00 AM

Dr. Lawrence Sher, Medical Director at Palos Verdes Medical Group and a physician at Peninsula Research Associates, discusses type 2 inflammation, an underlying cause of a certain type of asthma,1 and what true asthma “control” could look like.

How One Woman Refused to Let Asthma Control Her Life

The Next Breath Editorial Team

12/1/2019 12:00:00 AM

12/1/2019 12:00:00 AM

Tammy was diagnosed with asthma as an infant. Throughout her childhood, her asthma was severe but under control with help from her doctor, who prescribed an inhaler and other medicines.

THE A-HA ASTHMA MOMENT THAT HELPED LYNN TAKE BACK CONTROL

The Next Breath Editorial Team

11/5/2019 12:00:00 AM

11/5/2019 12:00:00 AM

Lynn talks about the moment when she realized her asthma was uncontrolled and she needed to make a change.

ARE THESE 5 MYTHS PREVENTING YOU FROM ASTHMA CONTROL?

The Next Breath Editorial Team

10/2/2019 12:00:00 AM

10/2/2019 12:00:00 AM

People living with asthma often overestimate their level of control. That’s why we’ve looked at five common myths about asthma and unpacked the facts.

Moving the future of asthma forward, together

Working together, we can bring more awareness to severe asthma,
illuminate the latest science and empower people to take action
to strive for better asthma control.

Start using your next breath today to inspire others to get informed and
check back soon to find more ways to get involved.

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