Defining fibrotic multi-morbidity in the UK population using electronic healthcare records

Study type
Protocol
Date of Approval
Study reference ID
22_002348
Lay Summary

Fibrotic diseases cause organ scarring, damaging the affected organ and decreasing its ability to function,
eventually leading to organ failure. Furthermore, patients can suffer from multiple fibrotic diseases, we have named
this multi-morbid fibrosis. Fibrotic diseases have been attributed to 45% of deaths in the developed world. An initial
analysis of healthcare data has estimated that 2% of the UK population suffer from multi-morbid fibrosis.
To date, there is little known about multi-morbid fibrosis and how fibrotic diseases progress. Using a random
sample of 1 million patients’ GP and hospital records we will determine how common multi-morbid fibrosis is, as
well as which fibrotic diseases commonly occur alongside one another. This is an important study as it will be the
first study aiming to understand how plausible it is to identify multiple fibrotic diseases in electronic healthcare
records. This study will provide pilot data for future studies where we will determine the incidence and prevalence of
multi-morbid fibrosis, however before we can do this, we need to understand more about the level of granularity
with which we can determine multi-morbid fibrosis in the data.

Technical Summary

Fibrosis can affect any organ; fibrotic conditions are characterised by excessive, uncontrolled deposition of
extracellular matrix in the effected site, this in turn alters the tissue’s extracellular environment, leading to organ
failure. Despite fibrosis leading to eventual organ death, there is still a large gap in the understanding of fibrotic
diseases’ aetiologies and pathways. Fibrotic multi-morbidity is defined as the simultaneous occurrence of more than one fibrotic condition in a patient.
Preliminary analyses using UK Biobank have shown that 2% of the general population suffer from fibrotic multi-
morbidities, 14.4% (roughly 10,000 patients) of all individuals with a coded fibrotic condition within UK Biobank have
more than one fibrotic disease code (different organs effected) and therefore can be said to be suffering from multi-
morbid fibrosis. However, a full-scale analysis has yet to be conducted, it is unknown how many people in the
UK suffer from fibrotic diseases, and therefore how many people suffer from multiple fibrotic conditions.
We will use primary care CPRD Aurum data linked with Hospital Episode Statistics (Admitted Patient Care) and the
Office of National Statistics Death registration data to conduct a descriptive analysis of multi-morbid fibrosis in
electronic healthcare records. We will use a random sample of 1 million patients in order to describe multi-morbid
fibrosis in the UK population. This will also help us understand how well multi-morbid fibrotic diseases can be
determined using EHR and with what level of granularity. This will be done at an organ level, to identify which organs
commonly experience fibrosis alongside each other. This study will provide pilot data for future studies looking to determine the incidence and prevalence of multi-morbid
fibrosis, however before we can do this, we need to understand more about the level of granularity with which we
can determine multi-morbid fibrosis in the data.

Health Outcomes to be Measured

Proportion of UK population with fibrosis in multiple organs.
Analysis of the median time to multiple organ fibrosis from single organ fibrosis.
Description of the order in which fibrotic diseases occur.

Collaborators

Jennifer Quint - Chief Investigator - Imperial College London
Georgie Massen - Corresponding Applicant - Imperial College London
Gisli Jenkins - Collaborator - Imperial College London
Hannah Whittaker - Collaborator - Imperial College London
Iain Stewart - Collaborator - Imperial College London
Louise Wain - Collaborator - University of Leicester
Sarah Cook - Collaborator - Imperial College London

Former Collaborators

Gisli Jenkins - Collaborator - Imperial College London
Hannah Whittaker - Collaborator - Imperial College London
Sarah Cook - Collaborator - Imperial College London

Linkages

HES Admitted Patient Care;ONS Death Registration Data;Patient Level Index of Multiple Deprivation