Imagine how you’d feel if walking up even a few stairs made you so winded that you gasped for air and had to sit down to catch your breath. For millions of Americans with Chronic Obstructive Pulmonary Disease, or COPD, that scenario is part of their everyday lives, and the simple act of breathing can be a constant struggle.
COPD, which includes chronic bronchitis and emphysema, is a progressive respiratory disease characterized by a loss of lung function over time. Primarily triggered by cigarette smoking, COPD is the second-leading cause of disability and the fourth-leading cause of death in the United States after heart disease. Beyond COPD’s physical symptoms lies a range of troubling emotions-frustration, anxiety and depression-which, according to a national survey conducted by Efforts (Emphysema Foundation For Our Right to Survive), may affect the way patients manage their disease. Efforts is a nonprofit patient organization dedicated to supporting and educating COPD patients.
“I’d wake up in the middle of the night scared and anxious because I couldn’t breathe,” says COPD sufferer Jacquie Bossert, 72, from San Diego. “To me, this disease meant I would have to give up all the important things in my life. But with the right resources, I’ve learned to manage my disease, so instead of feeling frustrated, I now feel empowered to get back to doing some of the things I enjoy.”
Overall, the 649 COPD patients in the survey, which was supported by Boehringer Ingelheim Pharmaceuticals, Inc. and Pfizer Inc., said that they most frequently felt uncomfortable, tired and frustrated. More than half reported more extreme emotions, saying that they “always” or “very frequently” felt troubling emotions. These included feeling burdened, overwhelmed, depressed, isolated, defeated, embarrassed or ashamed because of their disease. Nearly all said that they think about their condition at least once a day; are concerned about experiencing an exacerbation, a worsening of symptoms; and believe that other people think that they caused their condition themselves.
Importantly, patients who experienced extreme emotions were more likely to be very concerned about their condition worsening, think that there is nothing they can do to control it or were uncomfortable or reluctant to seek treatment. This group was also more likely to consider immediate symptom relief important and use short-term medications, often called rescue medications, at least once a day.
“These findings illustrate the fear and hopelessness that many patients feel, along with a possible emotional attachment to rescue medications,” says Dennis E. Doherty, M.D., Professor of Medicine and head of the Division of Pulmonary, Critical Care and Sleep Medicine at the University of Kentucky Chandler Medical Center and Chairman of the National Lung Health Education Program, which is dedicated to the identification and treatment of patients in the early stages of emphysema and related chronic bronchitis. “Maintenance therapies are more effective in managing COPD over time, but many patients are confused about the role of short- and long-term treatments in managing symptoms. Physicians need to recognize the emotional aspect of this disease and better educate patients on the value of maintenance therapy so they can get the treatment they want and need.”
To help address the issues found in this survey and the need for better disease education, Boehringer Ingelheim Pharmaceuticals, Inc. and Pfizer Inc., in conjunction with COPD Foundation, NLHEP (National Lung Health Education Program) and Efforts, have launched The Breathing Room, a nationwide COPD education program. The Breathing Room gives patients and the public the opportunity to learn more about COPD through innovative tools such as interactive disease animation. The program will also offer information about COPD from medical experts and will provide lifestyle and disease management tools and treatment options to help patients manage their disease more effectively.