New national survey finds lack of COPD knowledge among patients

In a new national survey of chronic obstructive pulmonary disease (COPD) patients, Health Union reveals a surprising lack of awareness of risk factors and knowledge of diagnosis stage among patients. Results demonstrate a severe impact on quality of life, employment, and ability to afford treatment.

COPD, the third most common cause of death in the United States, 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% of respondents were aware of COPD or its risk factors prior to their diagnosis. 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.

"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," said Leon C. Lebowitz, respiratory therapist and COPD.net moderator. "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. That's huge."

COPD clearly affects all aspects of life. Eighty-seven percent of respondents with COPD say they were unable to do as much as they could prior to acquiring the disease, with 32% 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 respondents spent at least $500 out-of-pocket for treatment and 42% avoided a medication due to cost. Forty-two percent also would switch to a generic drug if available.

While smoking is not the only cause of COPD (15% of people with COPD have never smoked), sixty-seven percent of respondents blame themselves for having COPD and 78% wish they had done things differently so that they would not have the disease.

"This survey illustrates the need for more COPD awareness and education amongst the general public and patients as well," said 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."

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