Dear participant, Thank you for your interest in this survey. If you decide to take part, you will help us better understand the experiences and treatment goals of people living with chronic airway diseases. Please read the information below before you decide whether to take part. This survey is voluntary and anonymous. Sincerely, Dr. Xander BertelsHead of Advocacy,EUFOREA
We want to better understand how people living with chronic respiratory diseases understand their condition and treatment goals. Your answers will help us improve everyday care so that it better meets patients’ needs and priorities.
Any person diagnosed with one or more of the following chronic airway conditions (nose, sinuses or lungs):- Asthma- COPD (Chronic Obstructive Pulmonary Disease)- Nasal polyp syndrome (also known as “Chronic rhinosinusitis with nasal polyps (CRSwNP)”)- Chronic rhinosinusitis without nasal polyps (CRSsNP)- Chronic rhinitis (hay fever (also known as “allergic rhinitis”) or non-allergic rhinitis) With “chronic” we mean an ongoing, lingering or long-term condition (more than 3 months). This is different from an “acute” condition like a common cold.
• Answer 27 short questions. The survey will take about 10 minutes.• Questions will ask about your understanding of your condition, your treatment goals, and the kind of information you wish had been / would be available.
• Taking part is completely voluntary.• You can stop the survey at any time.• There are no consequences if you choose not to take part.
There are no direct benefits for you associated with taking part in this survey. Your answers can help improve respiratory care.
There are no risks linked to taking part in this survey.
This survey is organised by:• Dr. Xander Bertels (EUFOREA, Belgium) • Dr. Sophie Scheire (EUFOREA and UZ Ghent, Belgium) • Prof. Dr. Peter W Hellings (EUFOREA and UZ Leuven, Belgium) EUFOREA is a global non-profit organisation that works to improve everyday care for people living with chronic respiratory diseases. There is no project-specific funding for this survey.
We collect:• General demographic information (in example, age range, gender, country) • Information about your diagnosis• Your views, understanding, and expectations about your condition and treatment goals.
• We collect and analyse all data anonymously.• Because your answers are anonymous, you cannot edit your answers once you completed the survey.• We will share combined results (not individual answers) with the EUFOREA Patient Advisory Board, may publish them in a scientific journal, and may present them at conferences.• We will use your insights to advocate for more patient-centred care.• We will not share your raw data with third parties or use it for commercial purposes.
• We will collect and store your answers safely on a secure, privacy-protected (HIPAA-compliant) platform called “Jotform”. • Only authorised EUFOREA staff can access the data. • We will store your data securely for 5 years after closure of the survey, then delete it.
If you have questions or concerns about this survey, please contact:• Dr Xander Bertels (xander.bertels@euforea.org)• Dr Sophie Scheire (sophie.scheire@euforea.org)
By clicking “Next” you confirm that:- You have read and understood the above information.- You agree to take part in this anonymous survey.- You allow us to use your answers as described above.
Importantly, from this point on, the survey will focus only on the condition you selected as most troublesome in your daily life. Please keep this condition in mind when answering the following questions.
In the next questions, we’d like to understand what you think or feel when these treatment goals are being used. Please know that there are no wrong answers and we would like to know your own personal perspective.