• Patient Survey

    Patient Survey

    Understanding your treatment goals. For people living with respiratory diseases.

  • 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 Bertels
    Head of Advocacy,
    EUFOREA

  • 1. Why are we asking for your input?

  • 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.

  • 2. Who is eligible to fill in the survey?

  •  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.

  • 3. What will you be asked to do?

  • • 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.

  • 4. Voluntary participation

  • • Taking part is completely voluntary.
    • You can stop the survey at any time.
    • There are no consequences if you choose not to take part.

  • 5. Are there possible benefits of taking part?

  • There are no direct benefits for you associated with taking part in this survey. Your answers can help improve respiratory care.

  • 6. Are there possible risks of taking part?

  • There are no risks linked to taking part in this survey.

  • 7. Who is organising and funding the research?

  • 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.

  • 8. What data will be collected?

  • 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.

  • 9. How will your data be used?

  • • 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.

  • 10. How will your data be protected?

  • • 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.

  • 11. Complaints

  • 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)

  • 12. Consent declaration

  • 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.

  • Part I

  • Q1. What is your age group?*
  • Q2. What is your biological sex (= sex at birth)?*
  • Q5: What chronic condition(s) of the nose, sinuses, or lungs are you living with? (Select all that apply)*
  • Q6. How long have you been living with this / these condition(s)? This means both the time before and after diagnosis. In case you live with multiple conditions, please indicate the longest duration*
  • Q7: If you could only choose 1 option, which type of prevention is most important to you?*
  • Q8. Has your doctor ever discussed ways to prevent flare-ups (also called exacerbations)?*
  • Q9. Has your doctor ever discussed ways to prevent your disease from getting worse or becoming irreversible (in the long-term)?*
  • Q10. Has your doctor ever discussed ways to prevent other diseases from developing?*
  • Q11. Did you receive any of the following therapies for a chronic condition of the nose, sinuses or lungs? (Select all that apply)*
  • Q12: If you have more than one condition, which one is most troublesome on your daily life?*

  • 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.

  • Q13. Which of the following healthcare providers is currently involved in the treatment of this condition? (Select all that apply)*

  • Part II

  • Q14: What result did you expect your treatment would have?*
  • Q15. Has one of your doctors ever explained or mentioned the goals of your treatment?*
  • Q16. Did this match with your expectations?*
  • Q17. Was your own expectation taken into account when choosing a treatment?*
  • Q18. Which goals have you set together with your doctor?*
  • Q19. Which goals did your doctor set for you?*

  • Part III

  • 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.

  • Q12. Do you know what is meant by ‘control’ of your disease?*
  • Q22. Do you know what is meant by ‘cure’ of your disease?*
  • Q24. Do you know what is meant by ‘remission’ of your disease?*
  • Q27. How did you find out about this interview?*
  • Should be Empty: