COPD Can Be Debilitating, Frustrating, and Devastating
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.
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.
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.
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.
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.
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.
How has your experience been navigating the healthcare system as someone with COPD?