EFNA Patient Experience Survey

Our colleagues at the European Federation of Neurological Associations are launching a pan-European survey on the impact of living with a brain disorder: The EFNA Patient Experience Survey. The aim is to find out how neurological disorders impact on the home, work/educational and social life of those affected. The survey will also assess the association with related conditions/syndromes e.g. mental wellbeing, chronic pain, bladder and bowel disorders, sexual dysfunction etc. and the satisfaction rates with treatment and management.

OUCH believe it is really important that we ensure that there is a large response from headache patients, particularly in the UK, as EFNA will use the data gathered to build a ‘Book of Evidence’ which will be taken to policy and decision makers in Europe as they continue their advocacy activities via a Member of the European Parliament Interest Group on Brain, Mind and Pain – to be launched in February 2015.

Along with the overall results, EFNA will also be publishing the data by country and by disorder. These will be made available after the launch for our use too.  So although there is already a lot of data in the headache field, this survey will allow us to compare the situation reported by headache patients to that of patients affected by other brain disorders.  It would of course be good to get a big response from the CH community (and other related headache types of course).

The survey is multiple choice and should take less than 15 minutes to complete. It is available in: English, French, Spanish, Italian, German, Dutch, Danish, Finnish, Polish and Romanian. The link to the English version is below; let me know if anyone would like links to any other languages.

English: https://www.surveymonkey.com/s/XJGMHR5

Many thanks

Peter