`    1COPD: Challenging Symptoms, Stigma and Stereotypes

Patient Survey Fact Sheet

 

Findings from a new national survey of 649 COPD sufferers, designed to explore the psychological impact that symptoms, stigma and stereotypes have on patients, revealed a physical and emotional burden that hinders better disease management.  The survey was conducted online by EFFORTS, a nonprofit patient support group, and was supported by Boehringer Ingelheim, Inc. and Pfizer, Inc.     

 

COPD Takes a Significant Physical Toll on Patients

·         The survey highlights the extreme physical impact of COPD – Chronic Obstructive Pulmonary Disease – which includes emphysema and chronic bronchitis:  More than nine in 10 patients frequently experienced symptoms associated with their breathing problems.   

 

Have you experienced any of the following symptoms as part of your lung condition?

 

 


Text Box: Percent of Patients

 

                                               

·         Living with COPD curtails many activities, preventing patients from engaging in leisurely activities on their own or with their loved ones.  Eighty-five percent said their symptoms kept them from participating in activities they once enjoyed, such as light exercise, travel and group/community activities.

 

Does your lung condition greatly limit your participation in any of the following activities?

 

Text Box: Percent of Patients

 

       


Living with COPD Can Be a Very Emotional Experience

·         Almost 90 percent of COPD patients surveyed thought about their condition daily.  Nearly nine in 10 were concerned about experiencing an exacerbation of their lung condition – a worsening of their symptoms that may require a physician or hospital visit.  An overwhelming number also felt that others believe that COPD patients brought on their lung condition themselves, reinforcing the stigma and guilt that many patients feel.

 

 

Text Box: Percent of Patients

 

 

·         The survey demonstrates the overwhelming emotional impact of the disease.  COPD patients reported frequently suffering from a range of troubling emotions:

Which of the following emotions describes how your lung condition makes you feel?

 

Text Box: Percent of Patients

 

 

·         More than half of patients (56 percent) reported a severe emotional burden associated with their disease, saying they “very frequently” or “always” felt burdened, overwhelmed, depressed, isolated, defeated, embarrassed or ashamed.  Women and younger patients (40-64) were more likely to report frequently suffering these emotions.

Which of the following describe how your lung condition makes you feel?

Text Box: Percent of Patients

 

The Emotional Toll of COPD Impacts Its Management

·         Overall, nearly one in five patients said their feelings made them uncomfortable and reluctant to get treatment.  Women and younger patients, 40-64, were more likely to feel this way, as were patients suffering most frequently and those very concerned about their condition worsening – groups that normally would be expected to seek help.

How many patients feel uncomfortable or reluctant to get treatment?

Text Box: Percent of Patients

 

                   

Severe emotional sufferers, those who responded “very frequently” or “always” feeling these emotions, were more likely than less emotional sufferers to be very concerned about their condition worsening, think there is nothing they can do to control their breathing problems, and feel uncomfortable or reluctant to get treatment.  In addition, severe emotional sufferers were more likely to use short-term medications, often called rescue medications, at least once-a-day, and consider immediate symptom relief important.

Text Box: Percent of Patients

 

 

·         Overall, nearly all COPD patients agreed that improving regular breathing (as opposed to just treating symptoms) and providing long-term relief were the most important characteristics of a COPD treatment.  Still, more than a third ranked immediate symptom relief as one of the three most desirable characteristics, correlating to the lack of control that many patients, particularly those most emotionally affected, feel.

 

Which is the most desirable characteristic – that is, what do you want most in a treatment?

 

Text Box: Percent of Patients

 

 

About the Survey

This COPD patient survey was fielded by KRC Research and sponsored by EFFORTS Emphysema Foundation for Our Rights to Survive in partnership with Boehringer Ingelheim Pharmaceuticals Inc., and Pfizer Inc. 

 

Conducted online over a three-week period from October 27 – November 20, 2005, the survey queried 649 COPD patients (male: 38 percent, female: 62 percent) over the age of 40 who are members of EFFORTS.  Survey participants responded to a link that was posted on the organization’s electronic bulletin board (listserv).  The estimated margin of error was ± 3.8 percent.

 

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