Diagnosing COPD: survey of patient experience across the UK
Research type
Research Study
Full title
Diagnosing COPD: survey of patient experience across the UK
IRAS ID
282423
Contact name
Alex Bottle
Contact email
Sponsor organisation
Imperial College London
Clinicaltrials.gov Identifier
researchregistry4762, Research Registry UIN
Duration of Study in the UK
0 years, 6 months, 17 days
Research summary
Chronic obstructive pulmonary disease (COPD) is the name used to describe a number of conditions including emphysema 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. It can be difficult to diagnose, as not much is known about how patients get their diagnosis, for instance whether when seen by their GP, following various clinical tests or during an emergency admission to hospital.
Our aim is to describe and model the journey of the patients’ view on their experiences and management of their disease, and how this affects their overall health and quality of life. 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 (acute flare-up), will help to improve the clinical management and outcomes in this patient group. Through focus groups and surveys, we will ask people with COPD directly for their experiences of being diagnosed and having an acute flare-up.
Lay Summary of Results:
For many people, it can be difficult to get a timely diagnosis for long-term lung diseases such as asthma, chronic obstructive pulmonary disease (COPD), bronchiectasis and interstitial lung disease (ILD). However, there is limited understanding the experience from a patient perspective of getting this diagnosis. In this study funded by the National Institute for Health and Care Research, we designed a survey with patient input that particularly focused on the time before patients sought healthcare, asking people for their perceived experiences of the diagnostic pathway – what they did when they first noticed symptoms, who they saw, how long this took etc. We also explored how this differed across the four conditions COPD, asthma, ILD and bronchiectasis. The online survey was distributed via the UK Taskforce for Lung Health and member mailing lists to patients as well as the charity website and social media accounts.
There were 398 valid responses to the survey (156 people with COPD, 119 with asthma, 67 with ILD, and 56 with bronchiectasis). Few respondents who were eventually diagnosed with asthma had not heard of their disease, the corresponding percentages for COPD, ILD and bronchiectasis were higher at 34.0%, 74.6% and 69.6% respectively. Between one in six and one in three people believed their delayed diagnosis was due to the health professionals’ lack of expertise or knowledge. People with COPD were more likely and asthma patients less likely to report they did not know the signs of potential lung disease than patients with the other two conditions. People with COPD were much more likely to report that they did not appreciate the severity or urgency of the situation (58.3%) than people with the other conditions.
We concluded that the reasons for delayed diagnosis were mainly due to healthcare professionals’ limited awareness and patients lacking the knowledge to recognise symptoms and their importance.REC name
London - Surrey Research Ethics Committee
REC reference
21/PR/0098
Date of REC Opinion
7 Apr 2021
REC opinion
Further Information Favourable Opinion