The study, called LUCID (Living with Ulcerative Colitis: Identifying the socioeconomic burden), which was undertaken by the University of Chester and the Economic research group, HCD Economics in partnership with Crohn’s & Colitis UK, showed that two thirds of people with Colitis experience pain and discomfort and over half have experienced anxiety and depression due to their condition.
These important first findings from the LUCID study highlight both the mental and physical impact Colitis can have on people living with the condition.
We are grateful to everyone who took part in the study. Their support means we have even more evidence to demonstrate how debilitating Colitis can be. We’re looking forward to seeing the full results published next year.
Helen Terry,
Director of Research, Crohn's & Colitis UK
LUCID included data from a number of different hospitals across Europe. The study was observational, which means the researchers reviewed a group of people living with Colitis, without changing anything about their treatment or care. This included collecting information from patients through questionnaires and surveys and matching it to clinical records completed by the patients’ consultants.
Patients and researchers working together, usually referred to as Patient and Public Involvement and Engagement (PPIE), can provide valuable evidence to support patients and carers in receiving the best care and treatment of Colitis. This study also describes what is most important to people living with Colitis, based on the information they gave about the social, economic and quality of life impact of their condition.
Such comprehensive research on the real-world evidence burden of Colitis across so many European markets has not been done before. Working in partnership with Crohn’s & Colitis UK ensured the HCD / University of Chester study collected data from real people living with Colitis, along with the academic burdens typically considered.
This invaluable collaboration means the true impact of Colitis for patients and their families is now evidenced and can be used to improve the health and social care for this community.
Alison Rose,
Real World Evidence Director, HCD Economics
Interview with Jonathan Evans, Data Analyst at HCD Economics
What is your research about?
"The purpose of the LUCID study was to evaluate the current burden of Ulcerative Colitis across ten European countries including the EU5 (UK, France, Germany, Italy, Spain) and Norway, Denmark, Romania, Poland and Turkey.
The primary objective was to measure the socioeconomic cost of Colitis including direct medical, direct non-medical and indirect costs. The secondary objective was to explore the impact of Colitis on patients’ quality of life and work productivity."
What have you discovered?
"People with Colitis whose disease went from moderate/severe to mild/remission during the study have a lower cost associated with their Colitis, a higher quality of life and a higher productivity in both work and non-work activities.
Despite this difference, overall people with Colitis show a higher than expected qualify of life which could potentially show the presence of a disability paradox, which means that people with the condition normalise certain debilitating symptoms and experiences as they live with them daily.
The area where we saw a significant impact was presenteeism, which means people with Colitis are still working but their productivity while working is being affected by their condition."
Why is your research important for those with IBD?
"Our research can help to educate not only people living with Colitis but also help friends, family and colleagues increase their understanding of the condition, particularly as it is an invisible illness.
Our research also highlights that indirect costs, such as stopping work because of Colitis actually takes up a large part of the overall cost of Colitis. This is a significant finding showing that a large part of the cost falls onto the person with the condition, who also has to live with the physical and mental burden of their disease."
What are the future implications of your research?
"We aim to use the data produced from the LUCID study in partnership with Crohn’s & Colitis UK to increase the knowledge surrounding Colitis which will benefit all those affected. We want to raise the profile of IBD, highlight the significant costs attached to the condition and the large impact it can have on quality of life.
Ultimately our research aims to provide evidence to healthcare decision makers which will help increase access to new treatments and medical interventions, with the potential to improve quality of life."
Why did you choose to specialise in IBD?
"New treatments in IBD such as biologics and JAK inhibitors have the potential to transform patient’s quality of life for the better and make the best use NHS resources. Therefore, a strong underlying understanding of the current burden of the disease is vital to ensure people with Colitis receive the best treatment in the future."
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