Patient survey on awareness of cancer-associated thrombosis (CAT) in people with cancer General Information Pack

Providing better information to cancer patients Overview Providing better information to cancer patients This pack has been created to provide you with all the information you may need about the ECPC patient survey on the awareness of cancer-associated thrombosis in people with cancer. It describes: what the survey is how we hope to recruit participants what the process will be for survey administration and data collection how you can help us disseminate it in your country

Why it is important Blood clots are the second most common cause of preventable death in cancer patients. Yet this condition remains under-reported, seldom discussed and often misdiagnosed

About the patient survey The survey Current and former patients with any type of cancer can take part. We will run the survey in 6 countries – starting with the UK pilot. European survey rollout will begin in June 2018. Patients can complete the survey online here: http://www.ecpc.org/CATsurvey/ At least 250 responses from each country will be gathered. We expect to produce a final report of all country results by October 2018. This survey is being led by Quality Health – an organisation with over 30 years’ experience and knowledge of developing and running patient, service user and staff surveys. Quality Health is following a rigorous step-by-step process for the development and distribution of the survey, working with patients in each country to ensure the quality and relevance of each translated questionnaire.

The questionnaire is set to be an important milestone in the comprehension of patient’s awareness of CAT What does it aim to understand? How aware cancer patients are of this cancer-related complication Where and from whom do they get their information about it What are the gaps in the support and information strategies and what can be done to fill them Who can participate in the survey? Current and former cancer patients Any stage of cancer, ideally diagnosed within past 5 years All cancer types, including the more thrombogenic cancers.

How can you help us publicise the survey? We would be most grateful if you could help us to publicise the survey within your network. Here are some quick and easy ways you can help us spread the word: Share our survey link with your followers on Twitter, Facebook and LinkedIn. Write about the survey on your website and/or in your newsletter. Share the live UK pilot survey link: http://ecpc.org/CATsurvey For more information you can contact Alex Filicevas at the European Cancer Patient Coalition at alex.filicevas@ecpc.org

The following slides contain ready-to-use patient survey text and images.

Facebook Suggested post (copy and paste): Can you help us understand how much patients know about thrombosis? People with cancer have a higher than normal risk of developing a blood clot - a condition known as cancer-associated thrombosis (CAT). Yet it remains under- reported, seldom discussed and often misdiagnosed. Therefore, the European Cancer Patient Coalition is running a patient survey to better inform discussions with policymakers and stakeholders, so that risks and symptoms can be dealt with appropriately. Save some time to answer the questionnaire: the more voices we express, the stronger we are! Cancer-Associated Thrombosis is one of the deadliest cancer-related complications. The European Cancer Patient Coalition survey is gathering insights from patients, to understand what are the gaps in patients awareness and support in tackling the issue and how to fill them. Please share your experiences! Right click on the image and ‘Save as Picture’

Twitter Suggested tweets (copy and paste): People with #cancer have a higher risk of developing #thrombosis (a blood clot), yet it remains under-reported, seldom discussed and often misdiagnosed. Help us understand how much cancer patients know about thrombosis. Take @cancereu patient survey: http://www.ecpc.org/catsurvey  Were you diagnosed with #cancer? Did you receive information about cancer-associated #thrombosis? People with cancer have a higher risk of developing blood clots, help us understand how much they know about it. Take @cancereu patient survey: http://www.ecpc.org/catsurvey Right click on the image and ‘Save as Picture’

LinkedIn Suggested post (copy and paste): The European Cancer Patient Coalition is the largest umbrella cancer patient organization in Europe, representing over 400 cancer patients organisations in Europe and beyond. The European Cancer Patient Coalition patient survey is gathering insights from patients, to help understand how much cancer patients know about thrombosis, and when and where they find this information. People with cancer have a higher than normal risk of developing a blood clot - a condition known as cancer- associated thrombosis (CAT). Yet it remains under-reported, seldom discussed and often misdiagnosed. Findings will inform discussions with policymakers and other stakeholders, in order to improve their understanding of cancer patients’ awareness of thrombosis, so that its risks and symptoms can be dealt with better. Please share your experiences!  http:///ecpc.org/CATsurvey Right click on the image and ‘Save as Picture’

Newsletters and websites Suggested post (copy and paste): Can you help build a better understanding of patient awareness about thrombosis? New patient survey launched in UK People with cancer have a higher than normal risk of developing a blood clot - a condition known as cancer-associated thrombosis (CAT). Yet it remains under-reported, seldom discussed and often misdiagnosed. The European Cancer Patient Coalition patient survey is gathering insights from patients, to help understand how much cancer patients know about thrombosis, and when and where they find this information. Findings will inform discussions with policymakers and other stakeholders, in order to improve their understanding of cancer patients’ awareness of thrombosis, so that its risks and symptoms can be dealt with better. The survey is being administered by the European Cancer Patient Coalition (www.ecpc.org), the largest umbrella cancer patient organization in Europe, representing over 400 cancer patients organisations in Europe and beyond. Please share your thoughts and experiences. To complete the UK survey, click here: http://ecpc.org/CATsurvey Right click on the image and ‘Save as Picture’

Thank You for helping us! And remember that you can reach us anytime Emma Moore at Quality Health Alex Filicevas at European Cancer Patient Coalition emma.moore@quality-health.co.uk +44 (0) 797 628 2632 alex.filicevas@ecpc.org +32 (0) 2 342 01 04