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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.

Infographic survey results on treatment side effects

Symptoms are frustrating and get in the way of everyday life

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.

Comments

  • Cathy Sheppard
    6 months ago

    I have server copd & on oxygen I’m very depressed most of the time I’ve inquired about transplant but my lung specialist is not very helpful so I’m getting a second opinion about my condition hopefully a new doctor can help me

  • retcornell
    1 year ago

    What is exacerbations

  • Leon Lebowitz, BA, RRT moderator
    1 year ago

    Hi retcornell and thanks for your excellent question. An exacerbation is a sudden worsening of the COPD condition and usually evidenced by an increase in any of the symptoms. I thought this article would provide you with some additional insight about COPD exacerbations: https://copd.net/clinical/frequent-exacerbations/. Wishing you the best, Leon (site moderator)

  • Baron
    1 year ago

    Regarding the defraying of medication costs by taking part in clinical trials, it should be remembered that these trials are often conducted testing new drugs such as inhalers etc. If your COPD is in an advanced stage, it is quite possible they will not be interested. From my own experience they prefer early diagnosis with patients not yet on oxygen or some of the more extreme steroid inhalers. It’s clear to understand why, as us ‘old hands’ do not respond to different inhalers in any meaningful way, in fact you could question the value of inhalers generally once you have reached ‘end-stage’ which I have been in for several years. Probably worth trying though.

  • Leon Lebowitz, BA, RRT moderator
    1 year ago

    Hi Baron and thanks for your comment and input. You make some good points which are certainly worth considering. However, in the end, anyone interested in participating shouldn’t shy away without giving those conducting the trials an opportunity to make the decision on who they feel is best to participate. In the end, that seems to be your view as well (“probably worth trying though”).
    Warm regards,
    Leon (site moderator)

  • molly
    1 year ago

    I had my first exacerbation on October,1st 2017…….l feel like l am counting down… stays on your mind…..l was in ICU for 9days….here summer is almost over and l still have not come back completely….l am 73 so that has some to due it….. haven’t been here for awhile …take care out there…..

  • Leon Lebowitz, BA, RRT moderator
    1 year ago

    Hi Molly and welcome back. I’m sorry to hear of your first exacerbation which resulted in a 9-day hospital stay. It’s behind you now although we understand it does take some time to completely recover and return to what is normal for your condition. We appreciate you updating us on your circumstances. You are always welcome here!
    All the best,
    Leon (site moderator)

  • Goofy
    1 year ago

    So far I’ve functioned as always except for needing more sleep and feeling a bit wobbly as I walk. A concentrator delivers oxygen to my lungs as I sleep and I think that helps me a lot. At times I wonder if I really do have an incurable disease. I’ve learned of folks who’ve had COPD for more than a decade and haven’t experienced worsening symptoms.
    Goofy

  • Leon Lebowitz, BA, RRT moderator
    1 year ago

    Hi Goofy and thanks for your post. Based on what you’ve said, it sounds like you’re adjusting to the condition quite well. There are many in our community who have told us they, too, have been stable for many years. Hopefully, this will be your experience as well.
    We appreciate your comments and input.
    All the best,
    Leon (site moderator)

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