Life in lockdown: experiences of patients with IBD during COVID-19

OBJECTIVE: COVID-19 has disrupted the normal way of life in the UK, but for some patients with inflammatory bowel disease (IBD), the impact of this unprecedented global emergency was far greater. We aimed to assess the experience of patients with IBD during the COVID-19 lockdown. DESIGN: We designed a survey focused on the impact of COVID-19 on IBD healthcare, social and psychological well-being and quality of life. To capture those most likely to be affected we targeted survey invitations at our British Society of Gastroenterology (BSG) defined high and moderate-risk IBD population. Access to the survey was also available via our trust’s social media pages. RESULTS: 685 responses were received. 76% of respondents categorised themselves in BSG defined moderate or high-risk groups, requiring stringent social distancing or shielding. 87% did not change their IBD medication, with most reported changes initiated by the IBD team. 39% were worried about their IBD care, but most services were largely uninterrupted. 90% received ‘at-risk’ notification often from multiple sources, but 17% not until May. The majority reported a negative impact of COVID-19 on their quality of life and significantly increased perceived stress. Patients expressed a strong wish of having future care delivered remotely. CONCLUSION: COVID-19 has had a significant negative impact on psychological well-being of patients with IBD. Local IBD services must have a robust data set of vulnerable patients and be designated future responsibility for prompt communication of advice to avoid delayed and sometimes conflicting information. Remote patient management systems should be further developed and embedded in clinical practice.