In a new national survey of chronic obstructive pulmonary disease (COPD) patients, researchers at Philadelphia, Pennsylvania based Health Union discovered a surprising lack of awareness of risk factors and knowledge of diagnosis stage — results that demonstrate a severe impact on quality of life, employment, and ability to afford treatment.
According to the Centers for Disease Control and Prevention, COPD is the third most common cause of death in the United States, (138,080) after Heart disease (597,689) and cancers (574,743). The American Lung Association notes that COPD is also a major cause of disability, and while some 12 millions Americans have a formal COPD diagnosis, an estimated 12 million more people may have the disease and go undiagnosed. Approximately 23 million men and women in the United States have COPD, which describes a group of lung conditions that severely impact the breathing of nearly 15 million people in the U.S. (or six percent of the population) and more than 65 million worldwide. Only 38 percent of respondents in the Health Union survey had been aware of COPD or its risk factors prior to their diagnosis, and almost one-third did not know their initial or current diagnosis stage. Additionally, at diagnosis about two-thirds wished they knew more about the potential impact of COPD and how to stop or slow down its progression.
COPD is a term that like “cancer” actually encompasses a range of conditions, but generally speaking refers to permanent lung damage that gets worse over time. The disease can affect patients’ airways, air sacs or both. The two most prevalent forms of COPD are chronic bronchitis and emphysema. Both cause airway blockage, resulting in shortness of breath, chronic productive coughing that produces large amounts of mucus, chest tightness and/or wheezing and other symptoms. Laboring to breathe can limit activity, diminish quality of life and put extra strain on the heart.
The leading cause of COPD is cigarette smoking. According to the National Institutes of Health, 42 percent of COPD sufferers are former smokers and 34 percent are current smokers. However the rest — a substantial 15 to 24 percent (estimates vary) — are persons who’ve never lit a cigarette, and it is believed that exposure to other lung irritants such as air pollution, chemical fumes, sidestream smoke, or dust, especially over long terms, also may contribute to development of COPD.
While smoking is not the only cause of COPD, 67 percent of respondents blame themselves for having COPD and 78 percent wish they had done things differently so that they would not have the disease.
“I think if asked, most people actually realize that smoking causes disease. However, the survey reveals that important information about the variety and severity of these types of disease is not reaching those at risk for COPD,” says Leon C. Lebowitz, a COPD.net moderator and Technical Director of the Respiratory Therapy Department at the Brookdale Hospital and Medical Center in Brooklyn, New York. “When armed with information, patients do take steps to change their lives. The survey shows that post diagnosis 68% of those that were current smokers quit and an additional 15% were trying to quit smoking. Thats huge.”
In terms of the two principal COPD categories, in emphysema, the walls between many of the lungs’ air sacs are damaged, losing their shape and becoming “floppy.” This damage also can destroy the walls of the air sacs, leading to fewer and larger air sacs instead of many tiny ones, and if this happens, the amount of gas exchange in the lungs is reduced.
In chronic bronchitis, the lining of the airways is constantly irritated and inflamed, causing it to thicken. Lots of thick mucus then forms in the airways, making it hard to breathe. Since most people who have COPD have both emphysema and chronic bronchitis the general term “COPD” is more comprehensively accurate.
COPD clearly affects all aspects of life. Eighty-seven percent of survey respondents with COPD say they were unable to do as much as they could prior to acquiring the disease, with 32 percent needing some form of help from a caregiver. In addition, respiratory infections, high blood pressure, and depression were frequently experienced among respondents.
Only 15 percent of survey respondents reported they are working full time. Twenty-eight percent were on disability with an additional forty percent fully retired. Symptoms experienced most frequently were:
• shortness of breath during everyday activities (78%),
• difficulty catching breath (74%), and
• fatigue/lack of energy (69%).
COPD and the accompanying breathing difficulties can make everyday physical activities like walking and even talking extremely difficult. There is currently no known way to undo the damage to the lungs.
Like with many medical conditions, COPD patients report expense negatively impacting medical care. More than half of the Health Union survey respondents had spent at least $500 out-of-pocket for treatment and 42 percent had avoided buying a medication due to cost. Forty-two percent also would switch to a generic drug if available.
“This survey illustrates the need for more COPD awareness and education amongst the general public and patients as well,” says Tim Armand, president and co-founder of Health Union. “As the incidence of COPD continues to grow, hopefully educational efforts like COPD in America and the new COPD.net website can bridge the information gap and ultimately improve care.”
The COPD In America survey was conducted online in April of 2015 with 1,009 respondents who were diagnosed with chronic obstructive pulmonary disease and a resident of the U.S. or U.S. citizen living abroad. More details about the survey are available upon request.
COPD.net is Health Union’s newest online community dedicated to COPD, where patients and supporters of people living with COPD can connect, share experiences and learn about managing the condition.
Health Union, LLC
Centers for Disease Control and Prevention
American Lung Association
National Institutes of Health