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Breathless in America: New Survey Reveals Impact of Chronic Obstructive Pulmonary Disease

This Continuing Education Unit is based on what some are calling “The most comprehensive U.S. survey to date” which highlights the toll of emphysema and chronic bronchitis. The study finds that many patients are not meeting the treatment goals they believe are possible.
It affects twice as many Americans as diabetes1 and is the nation's fourth leading cause of death.2 Yet surprisingly little is known about how chronic obstructive pulmonary disease (COPD), which includes emphysema and chronic bronchitis that decreases airflow in and out of the lungs, is viewed by patients and their physicians. A new national survey released today helps shed some much-needed light on a disease that is taking a tremendous toll on millions of people in the U.S.

Confronting COPD in America, the most comprehensive U.S. survey ever done on the disease, reveals that millions of Americans are suffering from shortness of breath so severe it interferes with even the most basic daily activities. Of the nearly 600 people with COPD interviewed:

"The survey confirms and quantifies what people living with COPD or caring for someone with COPD know from first-hand experience: It can be a debilitating disease that robs people of their breath and their independence," said Dr. Norman Edelman, spokesperson for the American Lung Association. "We see a growing demand for information about COPD, and a growing awareness that it is actually more common - and has a more profound impact - than other respiratory diseases."

COPD costs the

U.S.

economy an estimated $31.9 billion a year,3 or twice the amount associated with asthma, and in 1998 caused more than 112,000 deaths.2 The disease affects tens of millions of Americans. One estimate is that 16 million patients have been diagnosed with some form of COPD and as many as 16 million more are undiagnosed.1 New government data based on a 1998 prevalence survey suggest that three million Americans have been diagnosed with emphysema and nine million are affected by chronic bronchitis.4

Key Survey Findings
In addition to illuminating the disease burden of COPD, the survey also reveals several issues related to treatment. While the survey finds that patients and physicians are generally optimistic about advances in COPD treatment, it also suggests that patients are not meeting the treatment goals they believe are possible. The survey points to a strong need for better education about how to better manage the condition.

The survey paints a picture of a disease that takes a tremendous toll on patients. Describing their worst three months in the previous year, 58 percent said they had shortness of breath every day and 23 percent of patients said symptoms woke them up every night.

In general, half of all COPD patients (51 percent) say their condition limits their ability to work. Many say it also limits them in normal physical exertion (70 percent), household chores (56 percent), social activities (53 percent), sleeping (50 percent) and family activities (46 percent).
The survey also reveals that COPD symptoms are a cause of great distress for patients:

Optimistic But Suffering: Are Patients Settling for Too Little?
Patients and physicians are generally optimistic about the benefits of proper disease management. Nearly four out of five patients (78 percent) believe that there is better control of the disease than there was five years ago, and 74 percent believe that with proper treatment, it is possible to live a full and active life. Similarly, 76 percent of physicians say that the long-term health outlook for COPD has improved in the past decade, and most of this group (78 percent) credit the improvement to better medications.

Yet the survey also reveals a gap between what patients believe about COPD treatments and the realities of their life with the disease, says Dr. Stephen Rennard, Larson Professor of Medicine at the University of Nebraska Medical Center and one of the nation's top experts on COPD.
"On the one hand, patients believe that treatments are more effective than ever, and can allow them to lead full and active lives," says Dr. Rennard.

"On the other hand, the high levels of breathlessness and activity limitations revealed by the survey would seem to suggest that patients are not living up to their own expectations."

One issue revealed by the survey is that a considerable number of patients underestimate the severity of their COPD and/or overestimate the degree of control they have achieved. More than a third (36 percent) of those whose symptoms fit the criteria for the most severe degree of breathlessness describe their condition as "mild" or "moderate." One in four (25 percent) of those with the most severe degree of breathlessness say their COPD has been "completely controlled" or "well controlled" in the past year.

This disparity may reflect an underestimation of the extent to which COPD can be managed, and a tendency for patients to believe that even a high degree of suffering is the best that can be expected.
"The data suggests that people with COPD are judging their health and quality of life against drastically lowered standards," says Dr. Rennard. "They appear to be accepting the limitations imposed by the disease as normal."

The survey also points to the need for more education about effective COPD management. Although 36 percent of patients say they "completely" understand how best to manage the condition, just one percent of doctors say this about their patients. Still, a majority of patients (76 percent) and doctors (69 percent) agree that there is a "strong need" for better education about COPD.

The findings of Confronting COPD in America are based on interviews with 573 patients and 203 physicians. Interviews covered a wide range of attitudes, beliefs and practices related to COPD.

Confronting COPD in America was conducted by SRBI, a national research firm specializing in health issues. Its findings are supported by several leading respiratory organizations, including the American Lung Association, American College of Chest Physicians, National Lung Health Education Program and American Association of Respiratory Care. The survey was funded by the GlaxoSmithKline group of companies.

Learning Objectives
Upon successful completion of this course, you should be able to:

Chronic obstructive pulmonary disease (COPD) is an umbrella term used to describe airflow obstruction that is associated mainly with emphysema and chronic bronchitis.

COPD has affected tens of millions of Americans. One current estimate is that 6.5 million patients have been diagnosed with some form of COPD and as many as 15.2 million more have been left undiagnosed.1 Government data based on a 1998 prevalence survey suggested that three million Americans have been diagnosed with emphysema and nine million have been affected by chronic bronchitis.2 In 1998, COPD was the fourth leading cause of death in the United States, accounting for more than 112,000 deaths.3

Surprisingly little has been learned about COPD. Studies of the disease burden on patients with COPD have been scarce, and the social and healthcare costs of the disease have not been well quantified. As a result, there have been limited data about COPD symptoms and severity, disability or activity limitations, lifestyle impact, social and psychosocial consequences, healthcare utilization, and patterns of treatment.

Confronting COPD in America was designed to help answer some of these questions and unmask one of the nation's least understood public health problems. It was the largest and most comprehensive US survey to date of patient and provider knowledge, attitudes, and behavior related to COPD. Among the issues it explored were the frequency and severity of symptoms, the burden of illness, healthcare utilization, disease management and treatment, and quality of life issues.

How the Survey Was Conducted
The survey was conducted between August 2 and November 21, 2000. Telephone interviews were completed with a national sample of 573 patients with COPD. The sample was identified by systematically screening a national sample of 26,880 US households to find people aged 45 and older who had been diagnosed with COPD, emphysema, or chronic bronchitis, or whose symptoms matched a strict definition of chronic bronchitis. A national sample of 203 physicians— 100 primary care physicians and 103 respiratory specialists— was also interviewed as part of the survey (Figure 1).

Confronting COPD in America was conducted by Schulman, Ronca, and Bucuvalas, Inc. (SRBI), a national public-opinion research firm. Dr. Stephen Rennard of the University of Nebraska Medical Center served as an advisor. The survey was funded by GlaxoSmithKline, one of the world's leading research-based pharmaceutical and healthcare companies.

Who Has COPD?

Confronting COPD in America focused on people aged 45 and older who reported that they had been diagnosed with COPD, emphysema, or chronic bronchitis, or that they had symptoms of chronic bronchitis. Nearly equal proportions of patients with COPD reported diagnoses of COPD (29%), emphysema but not COPD (32%), and chronic bronchitis but not emphysema or COPD (28%). In addition, 11% of the survey sample was made up of people who met a stringent symptomatic definition of chronic bronchitis* but who had never been diagnosed as having COPD, emphysema, or chronic bronchitis (Figure 2). While the actual population prevalence of undiagnosed COPD is much greater than this would suggest, this subsample of symptomatic but undiagnosed patients with COPD provides important insights into the management of undiagnosed COPD.

COPD is frequently thought of as a disease of the elderly. Yet half (50%) of all patients with COPD surveyed were under 65 years old, and nearly a quarter (22%) were under 55 (Figure 3). The average age at diagnosis was 53 years.

The vast majority of people with COPD surveyed (87%) described themselves as white. The proportion of people with COPD who considered themselves African-American (7%), mixed (3%), or other race (3%) was substantially lower than the expected population proportions for those races (Figure 3). This may have been due in part to lower smoking rates among minority groups in the past, a possible underdiagnosis of COPD in these populations, the sample population, or some combination of these factors.

While COPD is often considered a disease that affects mostly male smokers, more women than men (60% versus 40%) qualified for the survey. Nine out of 10 people with a diagnosis of COPD (89%) or emphysema (92%) were current or former smokers. About three out of five people with diagnosed (63%) or symptomatic (68%) chronic bronchitis had a smoking history (Figure 4). Yet nearly one in five (18%) of all of these patients had never smoked.

There appears to be a strong familial association with COPD. It is unclear if this familial association is related to genetic factors, environmental factors, or both. Half of the patients with COPD surveyed (50%) reported that members of their immediate family outside of their household have had COPD, emphysema, or chronic bronchitis. Similar proportions of people diagnosed with emphysema (42%), and people with diagnosed (48%) or symptomatic (42%) chronic bronchitis, had a family history of COPD (Figure 4).

The survey revealed that most physicians believe that cases of COPD have increased. Nearly six out of 10 physicians (59%) said that the prevalence of COPD in America has increased in the last 10 years (Figure 5).

* Respondents in this category had to report that, for at least two years, they have suffered from persistent (at least three months/year) bronchitis or coughing with phlegm/sputum from the chest.