Historical Database Cohort Study Addressing the Clinical Patterns Prior to Idiopathic Pulmonary Fibrosis (IPF) Diagnosis in UK Primary Care

David Thickett, Jaco Voorham, Ronan Ryan, Rupert Jones, Robina Coker, Andrew M. Wilson, Sen Yang, Mandy YL Ow, Priyanka Raju, Isha Chaudhry, Antony Hardjojo, Victoria Carter, David B. Price* (Corresponding Author)

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

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Objective To explore the clinical pathways, including signs and symptoms, and symptom progression patterns preceding idiopathic pulmonary fibrosis (IPF) diagnosis.

Design and setting A historical cohort study was conducted using primary care patient records from the Optimum Patient Care Research Database.

Participants Patients included were at least 30 years, had IPF diagnosis, identified via clinical-coding and free-text records and had a consultation with a chest specialist prior to IPF diagnosis.

Outcome measures The signs and symptoms in the year prior to IPF diagnosis from clinical codes and free-text in primary care electronic records included: cough, dyspnoea, dry cough, weight loss, fatigue/malaise, loss of appetite, crackles and clubbed fingers. The time course of presentations of clinical features and investigations in the years prior to IPF diagnosis were mapped.

Results Within 462 patients identified, the majority (77.9%) had a respiratory consultation within 365 days prior to the chest specialist visit preceding the IPF diagnosis recorded in their primary care records. The most common symptoms recorded in the 1 year prior to IPF diagnosis were dyspnoea (48.7%) and cough (40.9%); other signs and symptoms were rarely recorded (<5%). The majority of patients with cough (58.0%) and dyspnoea (55.0%) in the 1 year before IPF diagnosis had multiple recordings of the respective symptoms. Both cough and dyspnoea were recorded in 23.4% of patients in the year prior to diagnosis. Consultation rates for cough, dyspnoea and both, but not other signs or symptoms, began to increase 4 to 5 years prior diagnosis, with the sharpest increase in the last year. Cough and dyspnoea were often preceded by a reduction in measured weight over 5 years leading to IPF diagnosis.

Conclusion Prolonged cough and/or progressive dyspnoea, especially if accompanied with weight loss, should signal for a referral to specialist assessment at the earliest opportunity.
Original languageEnglish
Article numbere034428
Number of pages10
JournalBMJ Open
Issue number5
Early online date30 May 2020
Publication statusPublished - 2020

Bibliographical note

The authors would like to extend their acknowledgement to Dr Dermot Ryan for his clinical and scientific input.

Funding: This study was partly funded by Roche Products Ltd and the Observational and Pragmatic Research Institute (OPRI). Roche was not involved in the preparation, drafting or editing of this manuscript.

Data availability statement: The data set supporting the conclusions of this article was derived from the Optimum Patient Care Research Database (www.opcrd.co.uk). The authors do not have permission to give public access to the study data set; researchers may request access to OPCRD data for their own purposes. Access to OPCRD can be made via the OPCRD website (https://opcrd.co.uk/our-database/data-requests/) or via the enquiries email info@opcrd.co.uk. The OPCRD has ethical approval from the National Health Service (NHS) Research Authority to hold and process anonymised research data (Research Ethics Committee reference: 15/EM/0150). This study was approved by the Anonymised Data Ethics Protocols and Transparency (ADEPT) committee—the independent scientific advisory committee for the OPCRD.


  • free-text record
  • interstitial lung disease
  • pathway features
  • principal component analysis


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