2020 Quality of Life Survey

Working in association, the Behçet’s Patients Centres and Behçet’s UK are launching the 2020 Quality of Life Survey for patients and members diagnosed with Behçet’s.

This will be familiar to the longer term Behçet’s UK members and patients of the Behçet’s Centres of Excellence, as it is very similar to the questionnaires from 2008 and 2014.

For 2020, the Quality of Life Survey is an online survey; not only will that keep costs of producing the survey to a minimum, but it will also allow for the results to be analysed and made available much more quickly. To access the survey, please follow this link


We hope that you will complete the survey, as it will help us to understand:

1. How Behçet’s presents itself across patients diagnosed with the condition.

2. How diet affects the symptoms of Behçet’s.

3. Whether the Behçet’s Centres of Excellence, run by the NHS, are meeting the medical needs of Behçet’s patients.

4. Whether the support provided by the Support Coordinators, employed by Behçet’s Patients Centres, is meeting the non-medical needs of patients attending a Centre.

5. Whether Behçet’s UK is meeting the needs of Behçet’s patients.

6. How Behçet’s compares with other illnesses using a similar questionnaire.

The survey will only take 15–20 minutes to complete. If you’re unable to complete it yourself, please ask a friend or carer to help as we’d like as many responses as possible.

When completing the survey, follow the instructions included with each question and either tick boxes, rank symptoms or write in the details as instructed. Please be honest with your answers to ensure the validity of the survey. All answers are voluntary, but we do ask that you fill in as much of the detail as you are happy to share. That way we get as much data as possible.

We’d really appreciate you taking the time to complete this survey, as the more responses we receive the more we can do with the results. We want to use the data to help to improve the services you receive from the Behçet’s Patients Centres, Behçet’s UK and the NHS.

If you have any questions about the research study, please contact John Mather, Operations Manager, Behçet’s Patients Centres, via email at john@behcetspatients.org.uk.

Many thanks for your continued support.

Tony Thornburn,
Chair of Trustees, Behçet’s UK

Jan Mather,
Chair of the Board of Directors, Behçet’s Patients Centres