Clinical Epidemiology (Jun 2024)
Using Routinely Collected Electronic Healthcare Record Data to Investigate Fibrotic Multimorbidity in England
Abstract
Georgie M Massen,1 Hannah R Whittaker,1 Sarah Cook,1 Gisli Jenkins,2 Richard J Allen,3,4 Louise V Wain,3,4 Iain Stewart,2 Jennifer K Quint,1 On behalf of DEMISTIFI consortiumAndrew Thorley, Anna Duckworth, Ali-Reza Mohammadi-Nejad, Aloysious Aravinthan, Anthony Harbottle, Armando Mendez Villalon, Chris Scotton, Christopher Denton, Daniel Lea, Dorothee Auer, Ebrima Joof, Eleanor Cox, Elizabeth Eves, Elizabeth Robertson, Emma Blamont, Fasihul Khan, Georgie Massen, Gina Parcesepe, Gisli Jenkins, Gordon Moran, Guruprasad Aithal, Hilary Longhurst, Iain Stewart, Jane Paxton, Jennifer Quint, Karen Piper Hanley, Kate Frost, Leo Casmino, Lisa Chakrabarti, Louise Wain, Margot Roeth, Maria Kaisar, Martin Craig, Michael Nation, Mohammad Alireza Kisomi, Mujdat Zeybel, Neil Guha, Nicholas Selby, Nick Oliver, Nick Selby, Olivia C Leavy, Penny Gowland, Philip Quinlan, Rachel Chambers, Richard Allen, Richard Hubbard, Rob Slack, Rutger Ploeg, Sam Moss, Sara Fawaz, Scott Turner, Shauntelle Quammie, Simon Johnson, Stamatios N Sotiropoulos, Stuart Astbury, Susan Francis, Tom Giles, Valerie Quinn, Wendy Adams, Xin Chen, Zhendi Gong 1School of Public Health, Imperial College London, London, UK; 2National Heart and Lung Institute, Imperial College London, London, UK; 3Department of Population Health Sciences, University of Leicester, Leicester, UK; 4NIHR Leicester Biomedical Research Centre, University of Leicester, Leicester, UK; National Heart and Lung Institute, Imperial College London, London, United Kingdom; University of Exeter, Exeter, United Kingdom; Sir Peter Mansfield Imaging Centre, Mental Health and Clinical Neurosciences, School of Medicine, University of Nottingham, Nottingham NG7 2UH, United Kingdom; Institute for Health Research (NIHR) Nottingham Biomedical Research Ctr, Queens Medical Ctr, Nottingham, United Kingdom; Nottingham Digestive Diseases Centre, Translational Medical Sciences, School of Medicine, University of Nottingham, Nottingham, UK; Nottingham University Hospitals NHS Trust and the University of Nottingham, Nottingham, UK; Patient and Public Involvement and Engagement, Nottingham University Hospitals, Nottingham, United Kingdom; Digital Research Service, University of Nottingham, Nottingham, United Kingdom; Department of Clinical and Biomedical Sciences, University of Exeter,Exeter, United Kingdom; Centre for Rheumatology, Royal Free Hospital and University College London, London, UK; Digital Research Service, University of Nottingham, Nottingham, United Kingdom; Mental Health & Clinical Neurosciences,School of Medicine, University ofNottingham, Nottingham, UK; Sir Peter Mansfield Imaging Centre,School of Medicine, University ofNottingham, Nottingham, UK; NIHR Nottingham Biomedical ResearchCentre, Queen’s Medical Centre,University of Nottingham, Nottingham,UK; School of Life Sciences, University of Nottingham, Nottingham, United Kingdom, 2National Public Health Laboratories; Ministry of Health and Social Welfare, Banjul, The Gambia; Sir Peter Mansfield Imaging Centre, School of Physics & Astronomy, University of Nottingham, Nottingham, UK; NIHR Nottingham BRC, Nottingham University Hospitals NHS Trust and the University of Nottingham, Nottingham, UK; Diabetes UK, UK; Diabetes UK, UK; Scleroderma and Raynaud’s UK, UK; Glenfield Hospital, University Hospitals of Leicester NHS Trust, Leicester, UK; Imperial College London, London, United Kingdom; Department of Population Health Sciences, University of Leicester, Leicester, UK; NIHR Leicester Biomedical Research Centre, Leicester, UK; Gisli Jenkins, Margaret Turner Warwick Centre for Fibrosing Lung Disease, National Heart and Lung Institute, Imperial College London, United Kingdom; Gordon W. Moran, NIHR Nottingham BRC, Nottingham University Hospitals NHS Trust and the University of Nottingham, Nottingham, UK; Guruprasad P. Aithal, NIHR Nottingham BRC, Nottingham University Hospitals NHS Trust and the University of Nottingham, Nottingham, UK; Dyskeratosis Congenita (DC) Action, UK; National Heart and Lung Institute, Imperial College London, London, UK; Dyskeratosis Congenita (DC) Action, UK; National Heart and Lung Institute, Imperial College London, London, UK; Division of Gastroenterology and Hepatology, Manchester University NHS Foundation Trust, Manchester, UK; Patient and Public Involvement and Engagement, Nottingham University Hospitals, Nottingham, United Kingdom; Sarcoidosis UK, UK; School of Veterinary Medicine and Science, Sutton Bonington Campus, University of Nottingham, Nottingham, UK; Medical Research Council Versus Arthritis Centre for Musculoskeletal Ageing Research, Nottingham, UK; Department of Population Health Sciences, University of Leicester, Leicester, UK; NIHR Leicester Biomedical Research Centre, University of Leicester, Leicester, UK; University of Nottingham, Nottingham, UK; Nuffield Department of Surgical Sciences, University of Oxford; Sir Peter Mansfield Imaging Center, School of Medicine, University of Nottingham, Nottingham, UK ; Wellcome Centre for Integrative Neuroimaging, Nuffield Department of Clinical Neurosciences, University of Oxford, UK; Quantified Imaging, London, UK; Kidney Research UK, UK; Sir Peter Mansfield Imaging Centre, Mental Health and Clinical Neurosciences, School of Medicine, University of Nottingham, Nottingham NG7 2UH, United Kingdom; NationalInstitute for Health Research (NIHR) Nottingham Biomedical Research Ctr, Queens Medical Ctr, Nottingham, United Kingdom; NIHR Nottingham Biomedical Research Centre, Nottingham University Hospitals NHS Trust & University of Nottingham, Nottingham, UK; NIHR Nottingham BRC, Nottingham University Hospitals NHS Trust and the University of Nottingham, Nottingham, UK; Centre for Kidney Research and Innovation, University of Nottingham, Royal Derby Hospital Campus,Derby, UK; Department of Medicine, Imperial College London, London, UK; Centre for Kidney Research and Innovation, School of Medicine, University of Nottingham; Department of Non-communicable Disease Epidemiology, The London School of Hygiene and Tropical Medicine, London, UK; Department of Health Sciences, University of Leicester,Leicester, UK; Universiy of Nottingham, Sir Peter Mansfield Imaging Centre, Nottingham, United Kingdom; The Digital Research Service, University of Nottingham, UK; Centre for Inflammation and Tissue Repair, University College London, London, UK; Department of Population Health Sciences, University of Leicester, Leicester, UK, 2NIHR Leicester Biomedical Research Centre, Leicester, UK; University of Nottingham, Nottingham, UK; Galecto, Stevenage, Hertfordshire, UK; Nuffield Department of Surgical Sciences, University of Oxford, and Biomedical Research Centre Oxford; Imperial College London, London, United Kingdom; University of Nottingham, Nottingham, UK; NIHR Nottingham BRC, Nottingham University Hospitals NHS Trust and the University of Nottingham, Nottingham, UK; University of Norringham, Nottingham, United Kingdom; Centre for Respiratory Research, NIHRRespiratory Biomedical Research Centre,School of Medicine, Biodiscovery Institute,University Park, University of Nottingham,Nottingham, UK; Sir Peter Mansfield Imaging Centre, School of Medicine, University of Nottingham, Nottingham, UK; Wellcome Centre for Integrative Neuroimaging, University of Oxford, Oxford, UK; National Institute for Health Research (NIHR) Nottingham Biomedical Research Centre, Queens Medical Centre, Nottingham, UK; Nottingham Digestive Diseases Centre, Translational Medical Sciences, School of Medicine, University of Nottingham, Nottingham, UK; NIHR Nottingham Biomedical Research Centre, Nottingham University Hospitals NHS Trust and the University of Nottingham, Nottingham, UK; Sir Peter Mansfield Imaging Centre, School of Physics, University of Nottingham, UK; The Digital Research Service & The Advanced Data Analysis Centre, University of Nottingham, UK; Margaret Turner Warwick Centre for Fibrosing Lung Disease, National Heart and Lung Institute, Imperial College London, United Kingdom; Action for Pulmonary Fibrosis, United Kingdom; School of Computer Science, University of Nottingham, UK; School of Computer Science, University of Nottingham, UKCorrespondence: Georgie M Massen, Email [email protected]: Electronic healthcare records (EHRs) are used to document diagnoses, symptoms, tests, and prescriptions. Though not primarily collected for research purposes, owing to the size of the data as well as the depth of information collected, they have been used extensively to conduct epidemiological research. The Clinical Practice Research Datalink (CPRD) is an EHR database containing representative data of the UK population with regard to age, sex, race, and social deprivation measures. Fibrotic conditions are characterised by excessive scarring, contributing towards organ dysfunction and eventual organ failure. Fibrosis is associated with ageing as well as many other factors, it is hypothesised that fibrotic conditions are caused by the same underlying pathological mechanism. We calculated the prevalence of fibrotic conditions (as defined in a previous Delphi survey of clinicians) as well as the prevalence of fibrotic multimorbidity (the proportion of people with multiple fibrotic conditions).Methods: We included a random sample of 993,370 UK adults, alive, and enrolled at a UK general practice, providing data to the CPRD Aurum database as of 1st of January 2015. Individuals had to be eligible for linkage to hospital episode statistics (HES) and ONS death registration. We calculated the point prevalence of fibrotic conditions and multi-morbid fibrosis on the 1st of January 2015. Using death records of those who died in 2015, we investigated the prevalence of fibrosis associated death. We explored the most commonly co-occurring fibrotic conditions and determined the settings in which diagnoses were commonly made (primary care, secondary care or after death).Results: The point prevalence of any fibrotic condition was 21.46%. In total, 6.00% of people had fibrotic multimorbidity. Of the people who died in 2015, 34.82% had a recording of a fibrotic condition listed on their death certificate.Conclusion: The key finding was that fibrotic multimorbidity affects approximately 1 in 16 people.Plain Language Summary: Fibrotic conditions are scarring conditions which impact the way an organ functions and eventually lead to organ failure. We studied routinely collected health data from GPs, hospitals, and death certificates to estimate the percentage of UK adults who had fibrotic diseases. We found that 1 in 5 people had at least one fibrotic disease, and we also found that 1 in 16 people had more than one fibrotic disease.Keywords: fibrosis, CPRD, electronic health records, multimorbidity, fibrotic multimorbidity, ONS
