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05 October 2022

In 2022, EFA is focusing on defining gaps in asthma patients and carers knowledge and information to empower asthma patients’ in better self-management and adherence. The GUIDE Asthma project is part of EFA’s mission to make the case for better health literacy tools and resources that ultimately eanble timely, accessible, and patient-centered care allergy, asthma and COPD patients in Europe.

What are asthma patient materials?

Living with a chronic disease means that asthma patients and carers are avid to information about disease prevention, asthma progression and treatment options, that are science based and accurate. However, currently one in three asthma and COPD patients in Europe do not feel involved in decision-making processes about their therapy and they often feel they are not offered personalised tools to be able to self-manage their disease. Moreover, 20% of asthma patients surveyed by EFA stated that they have “never heard about” written self-management plans.

Asthma guides are tools designed to help patients prevent and manage their disease. Typically, they are produced by scientific or research bodies, or by patient organisations. However, questions around their efficacy and widespread availability in patient communities prevail due to existing gaps in knowledge and awareness of the asthma patient experience. This experience can include what they endure in their daily lives, with regard to both self-management and disease progression, and what it takes to access tailored healthcare to address their unmet needs.

We want to hear directly from patients

The questionnaire will gather information among EFA’s members on their knowledge and access to educational material for asthma patients in their countries. The results from this survey will help provide a better understanding of the resources and materials currently available for patients and patient organisations at national and international levels. Equiped with this information, we can identify the gaps in knowledge, education and accessibility of these tools for asthma patients.

The EFA 2022 GUIDE ASTHMA project aims to assess the current information available with the ultimate goal of developing patient-friendly asthma guidelines for improved disease management. The survey will target patient organisations and their membership who are typically well-informed and resourced to have awareness of, disseminate and even produce such tools.

The questionnaire will be open for responses in September 2022. Once the data is collected and analysed, EFA will invite all members and relevant stakeholders to a workshop to discuss the results and the next steps to take in order to ensure access to educational material to all asthma patients.

Find more information about EFA 2022 GUIDE Asthma project on our website.

The questionnaire is available in 20 languages (Czech, Danish, English, Finnish, Icelandic, Latvian, Norwegian, Polish, Slovak, Swedish, Bulgarian, Croatian, Dutch, French, German, Italian, Portuguese, Serbian, Slovenian, and Spanish), available here and here.