National Survey of COPD Patients Reveal Lack of Information and Regret

Patrícia Silva, PhD avatar

by Patrícia Silva, PhD |

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Health Union recently conducted a nationwide survey of patients diagnosed with chronic obstructive pulmonary disease (COPD) and found many of these individuals did not have adequate knowledge of their condition’s risk factors and diagnosis. This surprising result was linked to significant effects on patients’ quality of life, employment, and ability to afford healthcare.

The survey revealed that only 38% of respondents were knowledgeable of COPD’s risk factors before they were diagnosed with the disease. Nearly a third were inadequately informed of their initial or current diagnosis stage, and another two-thirds said they wished they were given more information about the implications of developing COPD and how best to manage it.

“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, a respiratory therapist and 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 is ranked third among the leading causes of death in the country, and can be severely debilitating. About 87% of the survey’s respondents said their daily activities have been limited, and 32% admitted they have turned to caregivers to assist in some of their activities. The survey also revealed increased instances of respiratory infections, high blood pressure, and depression among respondents.

Out of the respondents, only 15% said they still manage to work full time schedules, while 28% were on disability. The remaining 40% have retired from work. According to the findings, these patients experienced the following symptoms regularly:

  • shortness of breath during everyday activities (78%),
  • difficulty catching breath (74%), and
  • fatigue/lack of energy (69%).

Aside from the irreversible toll COPD takes on the lungs that consequently puts limits on patients’ usual activities, seeking healthcare for the disease can be quite costly. Over half of the survey’s respondents reported spending a minimum of $500 out-of-pocket for necessary treatments, and about 42% admitted to foregoing certain medications due to financial constraints. About 42% said they would avail of more budget-friendly generic drugs if they were made available.

Despite smoking not being the only risk factor of COPD, 67% of the respondents admitted to feeling guilty for having smoked, and 78% wish they could have been more proactive about 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 website can bridge the information gap and ultimately improve care.”