European Federation of Crohn’s & Ulcerative Colitis Associations (EFFCA) is currently representing 39 national patient associations for Crohn’s and Ulcerative Colitis (collectively known as IBD – Inflammatory Bowel Disease). Over 10 million people worldwide today live with IBD (3.4 million in Europe only) and EFCCA is committed to give them more visibility and a louder voice to improve their lives.
Between March 30th and April 16th 2020, EFCCA undertook a global survey in order to investigate concerns and fears of IBD patients in regards to the COVID-19 pandemic: with the collaboration of Pro. Silvio Danese (Head of the IBD Center at Humanitas University Hospital in Milan), the questionnaire focused on the most frequent questions asked by patients to physicians during the COVID-19 pandemic.
Originally the survey was specifically for the Italian IBD patients’ community, given the serious situation people were facing there at the early stage of the pandemic, but due to the rapid spread of the COVID-19 pandemic worldwide, EFCCA saw it necessary to extend the survey to all the national associations. Thanks to the latter, the survey has been translated in 11 different languages, reaching 3815 IBD patients over 51 counties worldwide.
EFCCA is aware that this survey cannot identify all national differences and situations and knows each government is applying different containment rules according to the different level of seriousness of the situation in each country. However, some public institutions and local associations have also provided information and guidance to help the IBD community to react appropriately to the pandemic situation.
The most relevant result of the survey has shown that the patient associations represent the most reassuring factor to relieve patients from fears and concerns about COVID-19, more than the medical consultation. This result demonstrates that there is an urgent need to improve communication between all the stakeholders involved in IBD patient management, in order to give the patients aligned, coherent and reassuring recommendations, especially during an emergency period that causes even more concerns and disruption to people living with chronic diseases.
To read the full results of the survey, please click here.
To access an overview with general information on the survey respondents, please click here.
Published on 8 June 2020.