N03 Information flow experiences during COVID-19 in IBD patients: a prospective observational study

Geens, P.(1);De Dycker, E.(1);Paps, A.(1);Lambrechts, T.(1);Sabino, J.(1);Ferrante, M.(1);Vermeire, S.(1);

(1)KU Leuven, gastro enterology, Leuven, Belgium


During the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) pandemic, several patients contacted members of the IBD team with coronavirus disease 2019 (COVID-19) related questions. Some patients intended to cancel scheduled IBD clinic outpatient visits or endoscopic examinations and/or stop or postpone their medication. We surveyed the need for information by IBD patients during the SARS-CoV-2 pandemic and the role of the IBD team in this regard.


We performed an anonymous survey at the IBD department of our tertiary referral center. The questionnaire contained 15 closed questions, including on basic demographic data, medication use, testing for COVID-19, information sources, and intention to stop or postpone medication or follow-up. The questionnaire was available to all adult patients attending the IBD outpatient clinic and infusion unit from July 1st until October 30th 2020. All questionnaires were collected before the second COVID-19 wave. Patients on subcutaneous medication that did not attend the IBD clinic during these months were contacted via e-mail.


We collected 965 questionnaires. The majority of patients (44.3%) was 18-40 years old. There were more patients with Crohn’s disease (66%) than ulcerative colitis (32%) and IBD unclassified (2%). Demographics and medication use are presented in table 1. A third of the patients (31.7%) was tested for SARS-CoV-2, of whom 8.3% tested positive. Twenty-six percent of patients considered they had higher need for information about COVID-19 than the general population. News websites were a source of information about COVID-19 for 52.5% of patients, followed by hospital websites (43.8%), direct contact with the IBD physician (24.6%), direct contact with the IBD nurse (23.1%), and state sponsored websites (20.9%). In fact, 35.9% of patients contacted the IBD nurse since the start of the pandemic. The majority of patients reported they were satisfied by the information (80.5%) and/or reassured (85%) by the IBD nurse. Ten percent of patients had considered to stop IBD medication due to the pandemic, and 80% of these refrained to do so following the advice of the IBD nurses. Finally, 12.5% of the patients expressed true fear of hospital visits due to the pandemic, which was associated with female gender and higher need for information.


Treatment cessation and anxiety could be avoided by direct interaction with the IBD nurses and in particular with the IBD nurse as first point of contact for the patient. Patients with IBD may profit from an optimized information platform with scientifically correct information addressing the concerns of this specific population.