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

Abstract

ObjectiveCOVID-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.DesignWe 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.Results685 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.ConclusionCOVID-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.

Perceptions and Behaviors of Patients with Inflammatory Bowel Disease during the COVID-19 Crisis

“…As a result, the current survey achieved a relatively high response rate (61.9%) compared to previous studies. 4,5,26 In summary, most patients with IBD adhered strictly to the general principles for the prevention of epidemics. Although there were concerns about the increased risk of COVID-19 among IBD patients, most patients believed that maintaining their treatment is important.…”

Quality of life in patients with IBD during the COVID-19 pandemic in the Netherlands

“…24 25 29 The changed measures during the pandemic, described previously, come with uncertainty and stress, which could explain the low score of the emotional function and social function domains of the IBDQ in our study population. [30][31][32] Optimal IBD course consists of clinical symptoms combined with monitoring of biomarkers such as faecal calprotectin and C reactive protein. 13 33 34 However, during the pandemic, outpatient clinic visits were cancelled, resulting in reduced ability to collect blood for possible follow-up of biomarkers.…”

COVID-19 lockdown and lifestyles: A narrative review

“…Higher stress levels associated with lockdown measures were observed in some groups, such as women [185][186][187] (particularly pregnant women 188,189 ), single/divorced adults 81 , older people (particularly with pre-existing mental health conditions 175,190 ), parents with young children 191 , university students and young adults [192][193][194] , workers 195 , those self-medicating 196 , the economically deprived 143 , those with pre-existing depression 197 , bipolar disorders 198 , and other chronic medical conditions 139,189,[199][200][201] . A large study of 56,679 participants in China found that quarantine had a profound effect on the mental health of specific vulnerable groups, including those with pre-existing mental disorders, chronic physical diseases, frontline workers, and those living in the most affected areas 202 .…”