Article Text

Life in lockdown: experiences of patients with IBD during COVID-19
  1. Richard James Harris1,
  2. Louise Downey1,
  3. Trevor R Smith1,
  4. J R Fraser Cummings1,2,
  5. Richard Felwick1,
  6. Markus Gwiggner1
  1. 1Department of Gastroenterology, University Hospital Southampton NHS Foundation Trust, Southampton, UK
  2. 2Faculty of Medicine, University Hospital Southampton, Southampton, UK
  1. Correspondence to Dr Richard James Harris; richard.harris{at}cantab.net

Abstract

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.

  • inflammatory bowel disease
  • crohn's disease
  • ulcerative colitis
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Footnotes

  • Twitter @rich_j_h

  • Contributors LD, RF and MG created the survey. RJH provided the statistical analysis. RJH, LD, RF and MG wrote the manuscript which JRFC and TS critically appraised.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval Southampton research and development department deemed this survey a service evaluation project and not research. It was approved by University Hospital Southampton gastroenterology clinical governance lead and clinical effectiveness panel.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement All data relevant to the study are included in the article or uploaded as online supplemental information. All data relevant to the study are included in the article.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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