Temporal trends in single and multiple organ fibrosis prevalence and primary care consultations: a population based cohort study of 5·8 million individuals in England
File(s)
Accepted version
Author(s)
Massen, Georgie
Jenkins, gisli
Stewart, iain
Navaratnam, vidya
Quint, jennifer
Type
Journal Article
Abstract
Objective
To understand how prevalence estimates of single and multiple organ fibrosis have changed from 2012 to 2022.
Design
Retrospective population-based cohort study
Setting
Data from primary (Clinical Practice Resource Datalink Aurum) and secondary care (Hospital Episode Statistics Admitted Patient Care) electronic health records were used to conduct this study.
Participants
Adults age 18 years and over whose primary and secondary care records were available for research.
Main outcome measure
Fibrotic conditions previously determined from a Delphi survey of clinicians; diagnoses were found in either primary or secondary care records. The primary analysis estimated the prevalence of both single and multiple organ fibrosis prevalence. A secondary analysis used Cox proportional hazards models to investigate the association between the time-updated number of fibrotic conditions and risk of death adjusting for age and sex.
Results
The cohort consisted of 5,839,459 people with at least one fibrotic condition and a denominator of 18,784,962 people. Over the study period prevalence of fibrotic conditions increased by 6.72%, as of 2022, 19·95% (95%CI:19·92 to 19·98) of adults had at least one fibrotic condition. Prevalence of multiple organ fibrosis increased from 4·78% (95%CI:4·76 to 4·79) in 2012 to 8·51% (95%CI:8·50 to 8·53) in 2022. In the year preceding diagnosis of single organ fibrosis, the median number of primary care consultations was 14 compared with 21 consultations for people with multiple organ fibrosis. Compared with people with single organ fibrosis, people with two fibrotic conditions had a mortality hazard ratio of 2.90 (95%CI: 2.87-2.93), whilst people with three fibrotic conditions had a mortality hazard ratio of 5.22 (95% CI:5.14-5.30).
Conclusions
Prevalence of single and multiple organ fibrosis has substantially increased over a decade. People with multiple organ fibrosis access healthcare more than people with single organ fibrosis and are at a greater risk of mortality. Multiple organ fibrosis is estimated to effect more than three million people in the UK and is increasing. Better understanding of patterns of fibrotic multimorbidity may help to aid earlier diagnosis and opportunities for reducing mortality.
Strengths and limitations
· This study used a large, representative primary care database linked to secondary care records, enabling identification of fibrotic conditions recorded across both healthcare settings.
· Fibrotic conditions were identified using previously published clinical code definitions, although some included conditions may only involve fibrosis at particular stages of disease.
· Regional prevalence estimates were standardised using the age and sex distribution of the 2021 England Census population to improve population representativeness.
· Ethnicity, deprivation and lifestyle factors such as smoking, body mass index and alcohol consumption could not be fully incorporated because sufficiently complete or comparable data were unavailable.
· Reliance on routinely recorded clinical coding may have resulted in misclassification or under-ascertainment of fibrotic conditions.
To understand how prevalence estimates of single and multiple organ fibrosis have changed from 2012 to 2022.
Design
Retrospective population-based cohort study
Setting
Data from primary (Clinical Practice Resource Datalink Aurum) and secondary care (Hospital Episode Statistics Admitted Patient Care) electronic health records were used to conduct this study.
Participants
Adults age 18 years and over whose primary and secondary care records were available for research.
Main outcome measure
Fibrotic conditions previously determined from a Delphi survey of clinicians; diagnoses were found in either primary or secondary care records. The primary analysis estimated the prevalence of both single and multiple organ fibrosis prevalence. A secondary analysis used Cox proportional hazards models to investigate the association between the time-updated number of fibrotic conditions and risk of death adjusting for age and sex.
Results
The cohort consisted of 5,839,459 people with at least one fibrotic condition and a denominator of 18,784,962 people. Over the study period prevalence of fibrotic conditions increased by 6.72%, as of 2022, 19·95% (95%CI:19·92 to 19·98) of adults had at least one fibrotic condition. Prevalence of multiple organ fibrosis increased from 4·78% (95%CI:4·76 to 4·79) in 2012 to 8·51% (95%CI:8·50 to 8·53) in 2022. In the year preceding diagnosis of single organ fibrosis, the median number of primary care consultations was 14 compared with 21 consultations for people with multiple organ fibrosis. Compared with people with single organ fibrosis, people with two fibrotic conditions had a mortality hazard ratio of 2.90 (95%CI: 2.87-2.93), whilst people with three fibrotic conditions had a mortality hazard ratio of 5.22 (95% CI:5.14-5.30).
Conclusions
Prevalence of single and multiple organ fibrosis has substantially increased over a decade. People with multiple organ fibrosis access healthcare more than people with single organ fibrosis and are at a greater risk of mortality. Multiple organ fibrosis is estimated to effect more than three million people in the UK and is increasing. Better understanding of patterns of fibrotic multimorbidity may help to aid earlier diagnosis and opportunities for reducing mortality.
Strengths and limitations
· This study used a large, representative primary care database linked to secondary care records, enabling identification of fibrotic conditions recorded across both healthcare settings.
· Fibrotic conditions were identified using previously published clinical code definitions, although some included conditions may only involve fibrosis at particular stages of disease.
· Regional prevalence estimates were standardised using the age and sex distribution of the 2021 England Census population to improve population representativeness.
· Ethnicity, deprivation and lifestyle factors such as smoking, body mass index and alcohol consumption could not be fully incorporated because sufficiently complete or comparable data were unavailable.
· Reliance on routinely recorded clinical coding may have resulted in misclassification or under-ascertainment of fibrotic conditions.
Date Acceptance
2026-08-27
Citation
BMJ Open
ISSN
2044-6055
Publisher
BMJ Publishing Group
Journal / Book Title
BMJ Open
Copyright Statement
Copyright This paper is embargoed until publication. Once published the Version of Record (VoR) will be available on immediate open access.
License URL
Publication Status
Accepted