Breathless in America: New Survey Reveals Impact of Chronic Obstructive Pulmonary Disease
The most comprehensive U.S. survey to date highlights toll of emphysema and chronic bronchitis; finds that many patients are not meeting the treatment goals they believe are possible
Washington, DC - 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:
- Nearly half get short of breath while washing and dressing (44 percent) and or doing light housework (46 percent).
- One in three (32 percent) get short of breath while talking, and 28 percent have difficulty breathing even when sitting or lying still.
- Almost one in four (23 percent) say their condition has made them an invalid; eight percent are too breathless to leave home.
"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:
- 58 percent say they panic when they cannot get their breath; 52 percent feel they are not in control of their breathing and 52 percent admit that their coughing is embarrassing in public.
- 47 percent say they have a hard time making plans because of their condition, and 39 percent worry about having serious breathing problems when away from home.
- 66 percent say they expect their condition to get worse.
Even though COPD is a progressive disease, the survey reveals that younger patients (45 to 54 years old) report more severe and frequent symptoms, and greater psychosocial impact, than do older patients. This is a counterintuitive finding - older patients, not younger patients, should report the greater impact. One explanation is that younger patients are more acutely aware of their symptoms, while older patients have either grown more accustomed to symptoms or restrict their activities to avoid breathing problems.
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.
Background on COPD
COPD is an umbrella term used to describe the airflow obstruction associated mainly with emphysema and chronic bronchitis causing airflow obstruction. Emphysema causes irreversible lung damage by weakening and breaking the air sacs within the lungs. Chronic bronchitis is an inflammatory disease that begins in the smaller airways within the lungs and gradually advances to larger airways. It increases mucus in the airways and increases bacterial infections that block the bronchial tubes. Both conditions decrease the lungs' ability to take in oxygen and remove carbon dioxide.
Long-term smoking is the most common cause of COPD, responsible for 80-90 percent of all cases. Other risk factors are heredity, second-hand smoke, air pollution, and a history of frequent childhood respiratory infections.
The most common symptoms of COPD include shortness of breath, chronic coughing, chest tightness, greater effort to breathe, increased mucus production and frequent clearing of the throat.
COPD is progressive and irreversible; there is no cure. As it progresses, the lungs' small airways and alveoli lose their elasticity. The airway walls collapse, closing off some of the smaller air passages and narrowing larger ones. Airways become clogged with mucus and "stale" air gets trapped in the lungs.
Survey Methodology
Confronting COPD in America may be recognized as a "landmark" survey because it is the largest and one of the most comprehensive surveys about COPD conducted with a national probability sample of persons with COPD.
The survey findings are based on telephone interviews with national probability samples of patients and physicians. COPD patients were defined as persons ages 45 or older who had been diagnosed with COPD, emphysema, chronic bronchitis, or who met a stringent symptom criteria for undiagnosed chronic bronchitis. (A minimum of three months of bronchitis, or chronic coughing with phlegm/sputum from the chest, for a minimum of two years.)
A total of 573 persons were interviewed for the survey. Of this sample, 89 percent had been diagnosed with COPD, emphysema or chronic bronchitis; 11 percent of the sample met the symptomatic definition for chronic bronchitis but had not been diagnosed with COPD, emphysema or chronic bronchitis.
This sample was identified by systematically screening a geographically stratified national sample 26,880 U.S. households by telephone. National probability samples were drawn from two physician populations: physicians from adult primary specialties of general practice, family practice and internal medicine (n=100) and pulmonologists (n=103).
Patient and physician interviews were conducted by telephone from August to November, 2000.
The maximum expected sampling error is ± 4.1 percentage points at the 95% confidence level for a sample of 573 (e.g., patient survey). The maximum expected sampling error for a simple random sample of 100 (e.g., surveys of primary care physicians and respiratory specialists) is ± 9.8 percentage points at the 95% confidence level.
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