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EMOTIONAL BURDEN OF COPD – CHRONIC BRONCHITIS AND EMPHYSEMA – MAY MAKE PATIENTS RELUCTANT TO SEEK TREATMENT, SURVEY SHOWS
NEW YORK, JANUARY 31, 2006 – People with chronic obstructive pulmonary disease – COPD – suffer from a range of troubling emotions about their condition, including frustration, anxiety and depression, as well as feelings of self-blame, according to new survey results released today. The findings from a national survey of 649 COPD patients also show that these beliefs can affect the way they manage their disease, highlighting potential barriers to treatment of one of the country’s most common life-threatening illnesses.
COPD, which includes chronic bronchitis and emphysema, is a progressive disease of the airways that is characterized by a loss of lung function over time. It is the fourth-leading cause of death in the U.S.
2 and the second-leading cause of disability after heart disease.COPD patient survey highlights
The survey, conducted by EFFORTS -- Emphysema Foundation for Our Rights to Survive -- a nonprofit patient organization dedicated to supporting and educating COPD patients, and supported by Boehringer Ingelheim Pharmaceuticals, Inc. and Pfizer, Inc, showed that COPD’s emotional burden, compounded by fear and guilt, may discourage patients from seeking appropriate treatment.
Overall, COPD patients surveyed (n = 649) said that they most frequently felt tired, uncomfortable and frustrated. Nearly nine out of 10 reported that they think about their condition at least once a day, are concerned about experiencing an exacerbation -- a worsening of symptoms that can lead to a hospital or a doctor’s visit -- and believe that other people think that COPD patients bring on their condition themselves. In addition, more than half reported more extreme emotions, saying that their disease "always" or "very frequently" made them feel burdened, overwhelmed, depressed, isolated, defeated, embarrassed or ashamed.
"These survey results emphasize the emotional toll the disease has on patients who live with it every day," said Gary Bain, EFFORTS president. "As a COPD patient, I understand the overwhelming burden that comes with the disease, not only because of the symptoms but also because of the stigma and stereotypes that come with it. All of these factors can profoundly impact patients’ willingness to proactively manage their condition. We must correct these misperceptions and create more effective educational tools for COPD patients and the general community."
Patients who experienced the most extreme emotions may be less likely to manage their condition appropriately. Compared to other patients who did not experience extreme emotions, they were more likely to
Be very concerned about their condition worsening
Think there is nothing they can do to control their condition
Feel uncomfortable or be reluctant to seek treatment
In addition, more than nine out of 10 patients experiencing extreme emotions indicated that improving regular breathing and providing long-term relief were the most desirable characteristics of a COPD treatment. These patients were also more likely to include immediate relief as a top treatment concern. Further, they were more likely to use short-term medication, often called rescue medication, at least once a day in response to symptoms.
"These findings illustrate the fear and hopelessness that many patients feel, along with a possible emotional attachment to rescue medications," said Dennis E. Doherty, MD, Professor of Medicine and Chief, University of Kentucky Chandler Medical Center, Division of Pulmonary, Critical Care and Sleep Medicine and Chairman of the National Lung Health Education Program, which identifies and treats patients in the early stages of emphysema and related chronic bronchitis. "While there’s a role for rescue medications, maintenance therapies are more effective in managing COPD over time. Many patients, however, 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."
About the EFFORTS survey
Conducted by KRC Research, the COPD patient survey queried 649 COPD patients (male: 38 percent, female: 62 percent) over the age of 40 who are members of EFFORTS. The questionnaire, which patients completed online over a three-week period from October 27 to November 20, 2005, was designed to explore the psychological impact of living with COPD. The estimated margin of error was ± 3.8 percent. Copies of the survey results are available from KRC Research upon request.
COPD: One of the country’s most common life-threatening illnesses
COPD is one of most under-diagnosed and under-treated conditions in the United States. As many as 24 million Americans have impaired lung function, yet fewer than 12 million have been diagnosed with COPD. Cigarette smoking is the primary cause of COPD, accounting for 80 to 90 percent of the COPD cases nationwide
. Other causes of COPD include exposure to industrial dusts and chemicals.Researchers have also found a link between COPD and a genetic disorder involving a deficiency in the enzyme alpha1-antitrypsin (AAT) that normally prevents loss of the lungs’ elastic fibers.
The most common COPD symptoms include chronic cough, excess mucus production, wheezing and shortness of breath even after mild exertion or at rest. COPD is often associated with exacerbations of these symptoms, which can account for a high proportion of health-care costs associated with the disease. COPD is a leading cause of hospitalizations and accounts for nearly $40 billion in health-care costs in the United States. In the last 20 years, COPD was also responsible for nearly 50 million hospital visits nationwide. An expert panel convened by GOLD (Global Initiative for Chronic Obstructive Lung Disease), including the National Heart, Lung, and Blood Institute and World Health Organization, assigned a high priority to clinical research that might improve the management of COPD.
About EFFORTS
Emphysema Foundation for Our Rights to Survive (EFFORTS) is a patient-oriented organization committed to supporting people living with chronic bronchitis and emphysema, also known as chronic obstructive pulmonary disease (COPD). Formed in May of 1998, this nonprofit group has dedicated itself to supporting and educating COPD patients by providing health, treatment and lifestyle information to the benefit of the patient community. For further information on EFFORTS, please see http://www.emphysema.net.
KRC Research
KRC Research is a full-service opinion and marketing research firm. Its clients include corporations in changing markets, institutions and industries working to redefine their reputation, organizations running public education campaigns, and advocates for legislative change. KRC is a unit of the Interpublic Group of Companies.
07/11/2007