COPD Can Be Debilitating, Frustrating, and Devastating

Last updated: June 2023

COPD has an impact on both physical and mental health. Symptoms can be frustrating and often get in the way of everyday life. It is exhausting and emotionally draining to deal with COPD. We conducted a survey to address diagnosis, quality of life, relationships with family and healthcare providers, and symptoms, along with treatment usage, awareness, and experience. More than 2,000 people shared what life with COPD is like.

The Long road to diagnosis

For most, symptoms began before the mid-50s, but diagnosis oftentimes doesn’t happen until the late 50s to early 60s. For almost 2/3 of respondents, it took multiple healthcare providers to get a formal diagnosis.

Infographic survey results on treatment side effects

Symptoms are frustrating

Shortness of breath is the leading and most frustrating symptom, followed by fatigue. It was noted that fatigue has the highest impact on physical well-being. A large percentage of respondents are dealing with other health conditions, including hypertension, respiratory infections, allergies, pneumonia, high cholesterol, and cancer. Exacerbations are scary, and unfortunately very common.

Infographic survey results on treatment side effects

Worries and need for support

Many want their healthcare provider to look beyond the symptoms; to know about their emotions, struggles, and worries. The biggest worry is that their COPD will worsen, and there is a fear that comes with the “unknown future.” Beyond these emotional struggles, people reported a need for help with everyday activities, household duties being the largest need.

Infographic survey results on treatment side effects

Treatment plan satisfaction is low

Within a month of diagnosis, more than ¾ of people went on a prescription medication. A small percentage reported waiting over 2 years to start on COPD medication and the biggest reasons for this include lack of serious symptoms, no doctor recommendation, and financial barriers. Although many are currently on medication, respondents expressed a low satisfaction in their current treatment plan.

Infographic survey results on treatment side effects

COPD is expensive to manage

Many respondents feel that out of pocket spending has a significant negative impact on their household finances, and 25% reported that they avoid using a particular medication because of cost in the past 6 months. Only 12% of respondents have participated in a clinical trial, but 62% expressed that they are interested in participating in a COPD clinical trial. This can be a good option to combat the high cost of treatment.

Infographic survey results on treatment side effects

The COPD in America 2018 survey was conducted online from February through April of 2018. The 2,067 patients who completed the survey have been diagnosed with COPD; chronic obstructive pulmonary disease, emphysema, or chronic bronchitis.

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