What are the aims of the project?
We will provide the most up to date information on the diagnosis of coeliac disease, dermatitis herpetiformis, Crohns disease and ulcerative colitis in the United Kingdom (UK) today.
We will determine how many people have each condition as a proportion of the whole population (prevalence) and how many are newly diagnosed each year (incidence). Changes will be described by peoples age, gender, ethnicity, area they live in and socioeconomic position (a measure of inequality). We will also describe how many people with each condition may have been misdiagnosed or treated for irritable bowel syndrome (IBS).
Why is this research needed?
Our project will fill the gap in current estimates of prevalence and incidence of these conditions in the UK. Population-based estimates are essential for understanding the possible reasons why these conditions occur, and why they happen more in some people than in others. These numbers are needed for planning healthcare on a national scale to decide whether some areas or groups of individuals may need targeting for diagnostic investigation or increasing awareness of symptoms. Knowing the national burden and how patterns of diagnosis vary is a first step to improving diagnosis and treatment, and making standards of care more equal.
How will we carry out the research?
We will study the general practice healthcare records of millions people to calculate incidence and prevalence. Statistics will be used to calculate how they vary by different groups in the population and measure previous IBS diagnoses.
Aims of the project
We will provide contemporary estimates of the diagnoses of coeliac disease, dermatitis herpetiformis, Crohns disease and ulcerative colitis in the United Kingdom (UK). We will determine incidence and prevalence of each condition and describe how they vary by age, gender, ethnicity, socioeconomic position and area of residence. We will assess potential prior misdiagnosis as irritable bowel syndrome (IBS).
Why this research is needed
It is highly likely that coeliac disease remains underdiagnosed in the UK. We have no UK-wide figures for Crohns disease or ulcerative colitis diagnoses, so we do not know the potential for under-diagnosis or whether certain population groups are affected differently.
Our research will inform clinicians and policy makers of the occurrence of disease for the purposes of health care planning and will show potential areas for improvements in diagnosis that could be achieved. Quantifying the burden upon healthcare systems and society in general will have an impact on individuals affected by these conditions now and in the future as it could help to improve awareness, diagnosis and treatment. Understanding whether IBS misdiagnosis is continuing could help designing clinical diagnostic pathways to improve investigations for patients with gastrointestinal symptoms.
Design and methodology
We will design a population-based study using all longitudinal patient healthcare records from the Clinical Practice Research Datalink (CPRD). We will calculate incidence and prevalence of each condition from 2000-2019 and the number of prior IBS diagnoses. Poisson regression will be used for incidence time trends and stratifying estimates by sociodemographic characteristics. Hospital Episode Statistics is required to maximise information on peoples diagnoses and ethnicity. Patient and practice level Index of Multiple Deprivation and practice level urban-rural classification are required to characterise the distribution of diagnoses as a first step to understanding where and how diagnosis rates may be optimised.
coeliac disease, dermatitis herpetiformis, irritable bowel syndrome (IBS) and inflammatory bowel disease (IBD) which includes Crohns disease, ulcerative colitis, and unclassified IBD
Laila Tata - Chief Investigator - University of Nottingham
Laila Tata - Corresponding Applicant - University of Nottingham
Colin Crooks - Collaborator - University of Nottingham
Joe West - Collaborator - University of Nottingham
Mariam Ratna - Collaborator - University of Nottingham
Timothy Card - Collaborator - University of Nottingham
Yue Huang - Collaborator - University of Nottingham
Yvonne Nartey - Collaborator - University of Nottingham
2011 Rural-Urban Classification at LSOA level;HES Admitted Patient Care;ONS Death Registration Data;Patient Level Index of Multiple Deprivation;Practice Level Index of Multiple Deprivation