Patients & Clinicians Describe COPD Exacerbations Differently

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Researchers offered recommendations for clinicians to bridge gaps in communication with their patients who have chronic obstructive pulmonary disease.

Patients with COPD feel confident in identifying exacerbations but describe them using different language than clinicians, which could make communication less effective, according to survey results published in the International Journal of Chronic Obstructive Pulmonary Disease.

Frits ME Franssen, MD, PhD, and colleagues conducted a cross-sectional survey of 857 people with COPD living in Brazil, China, France, Spain, the US, and the UK. The survey included 27 questions about patients’ sociodemographics, comorbidities, and day-to-day experiences with COPD, as well as one open-ended question that asked patients to describe exacerbations in their own words:

Some people with COPD have times where their symptoms get worse than usual. During these times, people may do things to make themselves feel better, such as breathing exercises, using an inhaler, contacting their healthcare provider, taking antibiotics or steroids, or going to hospital. How would you describe these times when someone’s COPD symptoms are worse than usual?

Respondents were a median age of 58 years, 50.5% were male, and nearly one-third (31.5%) had comorbid asthma. The survey was administered online from March 10 to May 2, 2023.

How Do Patients Perceive Their COPD?

Most participants (78.3%; n=671) reported having at least one exacerbation over the course of their lifetime.

The most reported daily symptom was “shortness of breath” (72.7%), followed by “tiredness” (57.8%) and “cough” (48.5%). In addition, most participants (88.1%) experienced at least two symptoms daily.

Most responses indicated that daily symptoms “changed a little” (48.7%) or were “always the same” (45.3%). A small proportion of respondents indicated that their symptoms “changed a lot” (5.5%).

The researchers reported that 87.4% of respondents answered the open-ended question.

“Among the list of possible terms to describe ‘times when someone’s COPD symptoms are worse than usual,’ a great diversity of terms were selected, [with] ‘feeling worse than usual’ (40.1%), ‘COPD attack’ (29.4%), and ‘cold’ (26.3%) being the most commonly selected. ‘Flare-up’ (19.8%) and ‘exacerbation’ (17.7%) were used less frequently,” Dr. Franssen and colleagues wrote.

Many participants felt confident in their ability to identify exacerbations, saying that it was “very easy” (16.4%) or “fairly easy” (25.3%).

The researchers found that 60.4% of respondents used two or more methods to identify when they were experiencing an exacerbation: 70.3% of respondents gauged changes in daily symptoms, and 50% said they identified flares when they had more trouble than usual with their daily activities.

“Most respondents identified an exacerbation through new, worsening, or prolonged symptoms, often in combination with other indicators like changes in daily activities. In contrast, one-third of respondents relied on changes in their daily activities, prior exacerbations, or other people telling them. A small proportion did not know how to distinguish between exacerbations and daily symptoms,” the researchers said.

How Might Clinicians Bridge the Communication Gap?

The findings showed that patients often describe their exacerbations in ways that differ from the language used in clinical guidelines.

“In addition, strong emotions were reported in relation to exacerbations and are rarely used by clinicians to refer to these events (eg, being worried, frightened),” Dr. Franssen and colleagues said. “To describe an exacerbation, plain language like ‘feeling worse than usual’ was preferred to ‘exacerbation’ or ‘flare-up.’”

The authors provided the following recommendations to improve patient-clinician communication:

• Use less technical terms. Plain language is often more accessible for patients.
• Pursue multiple lines of questioning. Asking how patients felt may help identify exacerbations.
• Use open-ended questions. Ask about what actions patients took, what symptoms they experienced, when they felt fatigued, and when they could not do normal activities.
• Develop a discussion guide. Patients and clinicians can collaborate on a discussion guide that includes questions that healthcare professionals should ask and illustrates the various ways people with COPD describe their exacerbations.
• Implement educational programs. Alongside the discussion guide, educational programs can improve patients’ recognition and prevention of COPD exacerbations. In addition, educational programs can bridge the communication gap by ensuring that patients and clinicians use a common language to describe symptoms.
• Prioritize breathlessness. Evidence suggests that dyspnea is a concern for patients but is not prioritized by many pulmonary rehabilitation programs. Teaching patients how to manage their breathlessness may be an effective component of rehabilitation.