Key Point

By keeping patients with COPD informed and learning about what is important to them regarding their health, physicians can maximize the level of care and minimize patients’ anxiety.

SAN DIEGO—Recent COPD guidelines have highlighted the need for patient education. Despite this, very little research has been done regarding exactly what patients with COPD want—or don’t want—to know. Recently, a group of UK researchers undertook a qualitative study to identify the primary information needs of patients.¹ They interviewed 60 persons with COPD. During the course of the interviews, nine patient-generated core categories of information needs emerged. They were:

• Current progression and likely outcome of the disease (ie, what to expect).
• Effect of COPD on the body (ie, what the condition is and what it does).
• Current medications, why they are needed, and how to use them properly.
• New therapies and nonpharmacologic treatments, if and when these interventions would be appropriate.
• Current symptoms and what they mean.
• Symptom management, preventing new symptoms, and self-care.
• Practical information and counseling on health maintenance.
• Smoking-related information (ie, the role of smoking in COPD, smoking cessation and whether and how it would help).
• Identifying and responding to disease exacerbations.

Many patients lacked information about their disease, which affected their use of medications and their self-management behavior. The amount of information desired by patients varied greatly. For example, one patient wanted to know everything about COPD, whereas another believed that patients don’t need to know anything about their disease as long as the doctor knows what to do.

When asked about their knowledge of COPD, some patients thought that they had asthma because they had been given a prescription for an inhaler. Others had been told about their COPD but had been distracted during the consultation and didn’t remember much of what they had been told. Some patients knew that they did not have asthma; they used an inhaler but didn’t know why. One patient said, “I’ve had a bit of information … but not a great deal.... I’m not that inquisitive, and if there’s something wrong with me I’d rather them just get on with it and do what they can for me, rather than me know the ins and outs of the other side of it and make me feel worse.”

Some barriers to information seeking included problems in articulating questions, reluctance to take up professionals’ time during consultation, and perceived lack of time during consultation. One patient commented that it would be best if the physician took the initiative in information giving.

The interviews revealed that patients with COPD strongly associate quality of health care with information giving and that they highly value professionals who provide information.

EXACERBATIONS: WHAT’S IMPORTANT TO PATIENTS?

COPD exacerbations impair both quality of life and patients’ ability to perform daily activities. They can also hasten disease progression, necessitate medical care, and result in hospitalization.

In another UK study,² 125 patients with COPD were interviewed to determine what concerns them most during an exacerbation. Patients were 50 or older with a mean number of 4.6 exacerbations per year, each lasting for a mean of 12.7 days.

Patients were asked to rate the impact of the following nine attributes of COPD exacerbations:

• Impact on daily life.
• Medical care.
• Number of attacks.
• Breathlessness.
• Speed of recovery.
• Cough and phlegm.
• Social impact.
• Sleep disturbance.
• Impact on mood.

Each attribute was then described by levels ranging from least to most severe. For example, in the medical care attribute, the first level was “no need to see a doctor,” the second was “needed to see a doctor,” and the third was “admitted to hospital.”

The least favorable outcomes of COPD exacerbations from the patients’ perspective were, with respect to the impact-on-daily-life attribute, being housebound and being bedridden. In the medical care attribute, being hospitalized was the least favorable outcome.

What matters most to patients, according to this study, is the avoidance of hospitalization and of being housebound. Once patients become housebound, the level of ambulatory restriction becomes less important than not being/becoming bedridden.² These outcomes are even more important to patients than improvement in symptoms.

—Gale Jurasek

References
1. Caress A-L, Towey M, Luker K, et al. Information needs of patients with chronic obstructive pulmonary disease: a qualitative study. Presented at: annual meeting of the American Thoracic Society; May 24, 2005; San Diego, Calif.
2. Ståhl E, Larsson T. Exacerbations of COPD: what matters most to patients? Presented at: annual meeting of the American Thoracic Society; May 24, 2005; San Diego, Calif.

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