How People with COPD Perceive and Communicate Exacerbations: A Multicountry Survey Study

Exacerbations negatively impact quality of life of people living with chronic obstructive pulmonary disease (COPD) and can accelerate disease progression. Studies suggest that patients find it difficult to recognize exacerbations and, therefore, under-report exacerbations. We aimed to understand how people living with COPD perceive and communicate their experiences of exacerbations.

A cross-sectional survey including one open-ended question was developed using a targeted literature review, with input from patients and clinicians. People diagnosed with COPD were recruited from online consumer research panels in Brazil, China, France, Spain, UK, and USA and completed the survey. Responses were described overall and in specific subgroups; thematic analysis was used for the open-ended question.

Of 857 respondents (median age 58 years; 50.5% male), 623 (72.7%) reported daily shortness of breath; 417 (48.7%) that daily symptoms changed "a little". In the open-ended question, exacerbations were described through a narrative lens detailing subjective experiences of symptoms, their management, potential causes, and emotions felt during exacerbations, with no single preferred term. In the 671 (78.3%) respondents who reported ever having an exacerbation, these were identified as symptoms being "worse than usual" (52.8%) or because respondents had "more trouble than usual with daily activities" (50.1%).

While people living with COPD report confidence in their ability to identify exacerbations, there is a disconnect between their experience of exacerbations and the language and definitions used in clinical practice. A discussion guide emphasizing the use of plain language could improve communication between healthcare providers and patients.