Introduction:
Diagnosis of asthma, chronic obstructive pulmonary disease (COPD), bronchiectasis and interstitial
lung disease (ILD) can be convoluted, and limited data exist on understanding the experience of
diagnosis from a patient perspective.
Aim
To investigate a patient’s “route to diagnosis”, particularly focusing on the time prior to seeking
healthcare, and perceived experiences of the diagnostic pathway.
Methods:
An online survey was distributed via the UK Taskforce for Lung Health and member mailing lists to
patients as well as the website and social media accounts from 23/05/2022 to 05/07/2022. Analysis
was descriptive; chi-squared tests were performed to make comparisons across diseases.
Results:
There were 398 valid responses (COPD=156, asthma=119, ILD=67 and bronchiectasis=56). While
only 9.2% of respondents who were eventually diagnosed with asthma had not heard of their
disease, the corresponding percentages for COPD, ILD and bronchiectasis were 34.0%, 74.6% and
69.6% respectively. 33.9% of people with bronchiectasis believed their delayed diagnosis was due to
the health professionals’ lack of expertise or knowledge – 24.4% for asthma, 19.2% for COPD and
17.9% for ILD.
People with COPD were more likely (37.2%) and asthma patients less likely (10.9%) to report they
did not know the signs of potential lung disease (p<0.001). People with COPD were more likely to
report that they did not appreciate the severity or urgency of the situation (58.3%) than people with
asthma (32.8%), ILD (43.3%) or bronchiectasis (28.6%, p<0.001). The proportion of patients reporting
that they were being initially treated for another lung condition was higher in people with
bronchiectasis (44.6%) and lower in people with asthma (8.4%, p<0.001).
Conclusions:
Perceived reasons for diagnostic delay can help health professionals promote early diagnosis and
management. Patients’ limited knowledge of respiratory diseases also played a factor, indicating the
necessity to promote patients’ knowledge to encourage earlier help seeking.