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

Area of Science:

• Pulmonary Medicine
• Patient-Reported Outcomes
• Health Communication

Background:

• Exacerbations significantly impair quality of life and accelerate disease progression in chronic obstructive pulmonary disease (COPD).
• Patients often under-report exacerbations due to difficulties in recognition.
• Understanding patient perception and communication of exacerbations is crucial.

Purpose of the Study:

• To investigate how individuals with COPD perceive and communicate their experiences of exacerbations.
• To identify discrepancies between patient-reported exacerbations and clinical definitions.

Main Methods:

• A cross-sectional survey with an open-ended question was administered to COPD patients recruited from online panels across six countries.
• Targeted literature review and input from patients and clinicians informed survey development.
• Thematic analysis was used to interpret qualitative responses regarding exacerbation experiences.

Main Results:

• A majority of respondents (72.7%) experienced daily shortness of breath, with 48.7% noting slight daily symptom changes.
• Exacerbations were described narratively, encompassing subjective symptoms, management, causes, and emotions, without a uniform term.
• Respondents identified exacerbations as "worse than usual" symptoms (52.8%) or increased difficulty with daily activities (50.1%).

Conclusions:

• A gap exists between patients' self-reported confidence in identifying exacerbations and their lived experiences versus clinical language.
• Patient narratives highlight subjective symptom changes and functional impact.
• Utilizing plain language in a discussion guide may enhance patient-provider communication regarding exacerbations.