Diagnosing COPD: Survey of Patient Experience across the UK

Date of Approval: 
2021-01-15 00:00:00
Lay Summary: 
Chronic obstructive pulmonary disease (COPD) is the name used to describe a number of conditions including breathlessness and chronic bronchitis. It affects over a million people in the UK alone, and is a serious condition that reduces quality of life and costs the NHS a lot to treat. A common side-effect of COPD is that breathing can become very difficult (known as an acute exacerbation), causing damage to the lungs. It can be difficult to diagnose, and not much is known about how patients get their diagnosis, for instance when seen by their GP, following various clinical tests or during an emergency admission to hospital. Our aim is to describe and model patients’ journey from the first presentation with symptoms to eventual diagnosis, based on the patients’ own views and experiences of their condition and its management. Recognising the time taken, causes of delay, and the patients’ perception of their journey through to diagnosis, including their experience and understanding of their COPD diagnosis and exacerbation, will help to improve the clinical management and outcomes for these patients.
Technical Summary: 
Background: COPD is the fourth leading cause of death worldwide and accounts for 30,000 deaths each year in the UK. According to the Global Burden of Disease project, COPD caused 2.6% of global disability-adjusted life years in 2015 – the eighth most important disease on this measure. In the UK, 115,000 people are diagnosed with COPD each year – one every 5 minutes on average. There is limited understanding of what takes place between the initial onset of symptoms through to the eventual diagnosis of COPD. Our aim is to describe the patients’ perspective and experience of how they got their diagnosis and how long it took. Methods: An online questionnaire-based survey will be administered to eligible patients with COPD by their GP (identified as having COPD in CPRD, aged over 35 and able to give informed consent). This will give us an insight into the challenges and experiences faced by patients in getting their COPD diagnosis across the UK. CPRD records for those eligible patients will be inspected for patient characteristics such as age, gender, UK region, smoking and BMI. Results: Descriptive statistics will characterise the COPD population and their survey responses. Conclusion: The findings will feed into a larger risk-prediction modelling project that has ISAC approval; that project will also administer the proposed patient survey through the charity website and Twitter. The aims of the larger project are to understand the routes to diagnosis and first acute exacerbation, model the first acute exacerbation, and to inform the National Audit and NICE on appropriate measures and guidelines for diagnosis and management of COPD.
Health Outcomes to be Measured: 
• Patient perspectives & experiences from initial onset of symptoms through to diagnosis. • Symptoms experienced prior to diagnosis. • Time taken from initial symptoms to first presentation to the health service and to subsequent diagnosis of COPD. As there is no facility in ERAP to respond to comments, I will do this here. I need to respond to specific points on the survey relating to i) would patients be able to distinguish between urban, suburban and rural and ii) Where is the explanation that patients have been recruited via their records and stated to have COPD? Re i), self-reported answers to this are sufficient for our purposes, and our PPI reps and pilot testers believe that this is fine (see PPI section). Re ii) this is stated in the patient information sheet that will be sent to patients with the survey. It is not possible to upload the PIS as an appendix within ERAP as this is a revised protocol (a known issue with ERAP).
Application Number: 
20_000074
Collaborators: 

Alex Bottle - Chief Investigator - Imperial College London
Alex Bottle - Corresponding Applicant - Imperial College London
Benedict Hayhoe - Collaborator - Imperial College London
Jennifer Quint - Collaborator - Imperial College London
Rupa Sisodia - Collaborator - Imperial College London