Exploring the COPD Patient and Caregivers Experience with COVID-19 through Surveys: Highlights from Survey #1

The article was written by Ruth Tal-Singer, PhD, Delia Prieto, BSEd, MSEd, Vincent Malanga, BS, MCP, Bill Clark and Danielle Boyce, MPH

The COPD Foundation “COPD360” approach mobilizes partnerships between patients, caregivers, healthcare professionals, researchers, academic institutions, government agencies and industry leaders with a common mission of preventing COPD disease progression, and improving the lives of those affected. The COVID-19 pandemic has put individuals with COPD and other comorbidities at a high risk for poor outcomes, so the COPD Foundation is focused on keeping the community informed on emerging developments. COPD360social is serving a critically important role in our communications with the COPD community about COVID-19 and the specific needs and risks that may be faced by the individual with COPD.

Between March 29th and April 13th, we launched the first of a series of global surveys that aim to evaluate the experience of COPD patients during the COVID-19 pandemic. The survey was promoted via COPD360social and other COPD Foundation resources. Below is a first look at some of the data.

• A total of 566 COPD360social members responded, including 513 COPD patients (332 former smokers, 67 current smokers and 37 never smokers), 12 caregivers, 18 healthcare providers, and 14 family members or individuals with asthma).
• Bronchiectasis was reported by 98 of the participants (2 without COPD)
• 177 COPD participants experienced an exacerbation in 2020
• 16 participants (3%) were told they had COVID-19 by a healthcare provider. Of these 16 participants, 6 of them were actually tested for COVID-19 and only 2 of them received positive test results confirming the COVID-19 presence. Additionally, 2 of them were hospitalized for over a week.
  This number is consistent with other data showing that the incidence of COVID-19 is not higher in people with COPD, but the outcome (hospitalization) is worse. The results suggest that testing is underutilized in this at-risk population.

Thanks to a generous grant from AstraZeneca and support from SAS Analytics Software & Solutions we were able to analyze text responses on our survey using "Machine Learning" to learn what COPD patients are concerned about during this global pandemic.

• 446 of COPD participants reported taking medications for COPD. Based on text responses we could see what medications were most common in the population, which will inform questions in future COVID-19 studies.
• In response to the question: “Is there something you wish to share with us about your medications during this global COVID-19 health crisis?” there were 86 text responses. A few quotes are referenced below.
  • "I read reports that some drugs shouldn't be taken if infected with CV-19. That is concerning. I live in almost total isolation. Still, I seem to be heavily and frequently prone to lung attacks / infections…... I worry about my next exacerbation more than ever now, thanks to Covid-19. I'm 64 and I live alone .. Just me and my little…old dog. Now I feel like I am being stalked by the Grim Reaper."
  • "Been a very stressful time ..and having to daily take med is scary with this disease going around and wondering the impact on the prescription meds"
  • "I have been very sick during this time right before this started and I'm staying in my house and washing my hands and not having people in my house. Taking care of myself but I do not have the Coronavirus"
  • "I’m scared to death!"
  • "Social distancing and prayer, sleep, take meds ,eat well and get out in fresh air and contact others via phone etc.. everyday"
  • "my rescue inhaler… is on backorder and I'm concerned about the shortages"
  • "If you have severe COPD and your oxygen now will not come inside your home and are demanding you place tanks outside your door. what happens if a patient cannot put the tanks outside due to breathing issues on that particular day? How can we solve this very serious issue?"
• The computer text analytics helped immensely in summarizing the main concerns expressed by survey participants. The majority of survey responders wrote about fear or anxiety related to COVID-19, fewer participants were worried about the availability of healthcare providers, drug shortages and costs.
• This use of natural language processing provides a unique way to analyze the written responses. It is a technique that has to date received little attention in published medical reports.
• An interesting way to present the written responses is by using a “word cloud” (as pictured below). In word clouds, the size of the word is representative of how often the word was used in written responses (i.e. bigger words represent the words most commonly used in written responses). The word cloud below is an example of survey responses that mentioned symptoms reported by survey participants.

This first survey has been very informative and will allow us to focus on things that are of concern to the COPD community. Based on the data from this survey, we are writing research grant applications aiming to:

• improve and maintain access to healthcare,
• provide emotional well-being support during this pandemic, and
• further explore and share concerns about drug supply with our pharmaceutical partners.

We are appreciative to everyone who completed this first survey! Over the course of this pandemic, we will be repeating modified versions of this survey in an effort to collect more information on the experiences and concerns of our community members. These surveys will help drive our focus and allow us to continue supporting our community members throughout this unprecedented time. We are grateful to everyone willing (and hopefully will continue) to share their thoughts and feelings!