Feb. 23, 2001 -- Shortness of breath so extreme it's difficult to talk, or even get dressed in the morning without feeling exhausted -- that's what doctors call chronic obstructive pulmonary disease (COPD). It's common among long-time smokers, a cause of lung damage called emphysema. In others, COPD can cause chronic bronchitis -- which is associated with chronic cough and phlegm.
A new survey shows that too many Americans are needlessly letting COPD limit their lives, when effective treatments are available. The poll of nearly 600 people diagnosed with the disease -- said to be the most comprehensive U.S. surveys ever done on COPD -- was sponsored by the American Lung Association, the American College of Chest Physicians, and the American Association of Respiratory Care.
"It's an insidious disease that sneaks up on you but doesn't really become serious until you reach middle age," says Sam Giordano, RRT, executive director of the American Association for Respiratory Care, a national professional association for respiratory therapists.
"Many people don't even know they have it," Giordano tells WebMD. "When they were 25, they might not have had any problem walking up a couple of flights of stairs. But when they hit 55, they have difficulty and they think it's because they're getting older. They may, in fact, have COPD."
Through the survey, researchers found the following:
- Nearly half of the respondents become breathless while washing and dressing and/or doing light housework.
- One in three gets short of breath while talking and/or has difficulty breathing even when sitting or lying still.
- Almost one in four says the condition has made him or her an invalid, and one in 10 are too breathless to leave home.
The condition limits their ability to work, social life, sleeping patterns, and family activities. Many times it can cause sufferers to panic when they can't catch their breath (58% of those surveyed said so), and others admit their coughing causes them embarrassment in public (52%). They worry about having serious breathing problems when they're away from home (39%) and have a hard time making plans because of their condition (47%).
"It controls their lives, yet they don't even realize it," says Giordano. "Many people thought their health was pretty good. Because the progress of disease is so slow, over time they tend to compensate by limiting activities. In many instances, they're not even aware they are doing it."
Researchers also found that although patients and their physicians were optimistic about treatments for COPD, the realities of patients' lives told a quite different story. Patients were not living up to their own expectations, instead settling for a much more limited lifestyle than necessary.
More than one-third who fit criteria for "severe breathlessness" described their condition as "mild" or "moderate." One in four of the most severe patients felt their COPD had been "completely controlled" or "well controlled" during the past year.
"Many people just don't realize how much better their lives can be," Giordano tells WebMD. "With the right medications and rehabilitation -- getting people to exercise -- we can certainly slow progression of the disease, and greatly enhance their quality of life."
Too many of these patients may be seeing a primary care physician or internist, when instead they need a specialist in pulmonary care, says Gerard Criner, MD, chair of pulmonary and critical care medicine at Temple University in Philadelphia.
"A general care physician or internist may not have kept up with newer treatments or guidelines for categorizing the severity of the disease," Criner tells WebMD. "Many patients we see here are the sickest, and have not been maximizing their use of oxygen, and they're not optimizing their medications."
Criner is enrolling patients with moderate to severe emphysema in a clinical trial -- sponsored by the National Heart, Lung, and Blood Institute -- which will compare medical treatment to surgical removal of diseased portion of the lung.
Another government-funded trial will soon begin enrolling patients to study whether a form of vitamin A can slow progression of emphysema, Criner tells WebMD.