This is a unique EU-wide survey aimed at capturing the experience of HEADACHE patients across diseases and member states as regards various dimensions of access to healthcare and treatment. The survey was designed by patients and patients’ representatives.

What is the survey about?

This survey aims to gain knowledge on the perception of headache patients across the European Union as to access to healthcare. It looks at 5 dimensions of access to healthcare:
  • Availability – whether a healthcare service or product is available in the healthcare system of your country
  • Affordability – whether seeking healthcare causes financial hardship to patients.
  • Accessibility– Whether there are barriers, other than financial (e.g. waiting lists, geographical barriers…), that stop patients from accessing healthcare
  • Adequacy – the quality of healthcare and involvement of patients in shared decision making with their healthcare professionals
  • Appropriateness – whether healthcare is tailored to the need of the individual patient in the population, preventing stigmatization

Who is the survey for? 

This survey is aimed at individual headache patients
You do not need in-depth knowledge on healthcare to complete this survey, questions are primarily about your experience, there is no wrong or right answers.

How much time will it take?

This survey consists of 15 questions, some of which have tick-box options. It should take around 10 minutes to complete.

The survey is open until 28th February

Will my identity be published? 

The survey is anonymous. We only ask for information necessary to analyse the results, e.g., demographic and country information. No personal information will be published. If you wish to be contacted further, for example for an interview, you can provide your contact details.

By completing and submitting this survey, as a participant, you are providing your informed consent.

How will the survey responses be used?

This survey is being conducted by the European Headache Alliance (a non-governmental organisation) that works with patient organisations in public health and health advocacy across Europe.
The results will be used by EHA to inform our crucial advocacy work on access to healthcare and health inequalities at EU level. Survey results will be presented at an event in the European Parliament in Brussels, in March 2018.

The survey report will be published and available for free on the EHA website,

If you would like additional information about the survey or clarifications on the content, please do not hesitate to write at the following email address:

Thank you for your support!

* 1. Have you been diagnosed with:

* 2. What is your gender:

* 4. Do you live in:

* 5. A household may have different sources of income and more than one household member may contribute to it. Thinking of your household’s total
monthly income: is your household able to make ends meet?

* 6. How do you rate your general health status?

* 7. Thinking of access overall, how difficult or easy was it to actually obtain the healthcare services you needed (medicines, diagnostic tests, doctor visits, etc) for your cluster headache within the past 12 months?

* 8. How would you rate access to information on available healthcare services for cluster headache from the following sources or channels?

  Very Poor Poor Average Good Very good Don´t know
The Doctor's practice
Social Media
Patient´s organisations
Public Health Authorities

* 9. When you need it for headache can you afford financially to access?

  Always Very often Sometimes Rarely Very rarely Don´t know
Your Primary care physician
A Specialist physician
Specialized healthcare providers (physiotherapists, psychologists, complementary therapies practitioner, etc)
Medicines and other treatments
Diagnostic tests

* 10. Do you experience financial difficulties as a result of spending on healthcare for your headache?

* 11. What do you think of the statement: My healthcare costs for cluster headache are covered to a sufficient degree by my healthcare system (whether it is tax based or social insurance based):

* 12. Over the past 12 months, have you experienced a significant delay in accessing:

  Yes No Not relevant
Surgery or other procedures
Diagnostic tests
An appointment with a GP
An appointment with a headache specialist
Help & support from social services or other form of protection

* 13. Would you agree with the following statement on the quality of care for your cluster headache?

  Always Very often Often Sometimes Rarely Never Don´t know
I receive good quality care according to the standard/ guidelines or best practices available for my condition
My healthcare provider involves me in decisions about my headache care
Research on innovative treatments for Cluster Headache is prioritized compared to other chronic diseases

* 14. Have you ever been stigmatized or discriminated against because of your cluster headache? What kind of discrimination have you experienced? (mark all that apply)

* 15. What do you think is the most important action policy makers could take to improve access to healthcare in your country?