COVID-19 and the Chronic Lung Conditions Community – How are we doing after 6 months?

This article was written by Delia Prieto, BSEd, MSEd, Danielle Boyce, MPH, Bill Clark, and Ruth Tal-Singer, PhD

It has been over six months since the COPD Foundation’s first international community survey that helped us understand the impact of the global COVID-19 pandemic on individuals with chronic lung conditions. We have been using the results to provide resources and programs to our community members in addition to developing new research and advocacy efforts. We previously reported highlights from Survey #1 and Survey #2 and are now analyzing the data from Survey #3, which was live for approximately one month, from mid-August to mid-September 2020. The survey was promoted through several COPD Foundation channels including our online communities, e-newsletters, social media and other advocacy groups.

Profile of Survey Respondents

Not all respondents answered every question, so the percentages reported in this article reflect only the respondents who answered the particular content being reported, unless otherwise specified. Approximately one quarter (26%) of the respondents indicated that they had completed at least one of the previous COPD Foundation’s COVID-19 surveys, which will help us understand what changed over 6 months.

Location: Of those who provided information on their location, 83% (258) were from the US, 4% (12) were from the UK, 4% (11) were from Europe, 3% (8) were from Canada, and 5% (14) reported they were from an ‘Other’ location. Those who reported ‘Other’ locations wrote that they were from India, Nepal, Australia, Mexico, Afghanistan, and East Timor. The U.S. map below demonstrates the number of respondents by state, and the bar graph below demonstrates the breakdown of respondents by country/continent.

Race and Ethnicity: Fifty-nine percent (212) of the respondents were White, 2% (8) were Asian, 2% (8) were Black or African American, 1% (5) were American Indian or Alaska Native, and one respondent was Native Hawaiian or “Other Pacific Islander”. The remaining survey respondents did not report a race. Only 3% (10) identified themselves as Hispanic/Latino.

COVID-19 Diagnosis, Concerns, and Coping Mechanisms

Survey participants were asked a series of questions related to COVID-19 diagnosis and COVID-19 related concerns. The continued collection of this type of information is allowing the Foundation to better understand how the ongoing pandemic is affecting our community.

A small percentage (8%, 27 respondents) who answered the COVID-19 questions were told by a health care professional that they may have COVID-19, and of those, 13 indicated that they were tested for COVID-19 (5 tested positive, 6 tested negative, and 2 preferred not to share the results of their COVID-19 test). These findings are similar to those of other studies, showing that COVID-19 infection is not more common in people with chronic lung conditions.

Nearly 59% (210 respondents) of those who answered the COVID-19 questions expressed at least slight concern related to COVID-19, and over 40% (146 respondents) indicated they were "very concerned" or "extremely concerned". Only a few respondents (6) indicated they were not concerned at all.

Understanding that COVID-19 has affected all aspects of life, we asked survey participants about the changes they have made to their daily lives during the pandemic. The three most commonly reported changes were: 1) changes to the way they interact with family and friends – reported by 47%, 2) changes to the way they interact with health care providers – reported by 37%, and 3) avoidance of leaving the house – reported by 37%.

In comparing these results to results from our previous COVID-19 surveys, we have found that community concerns for COVID-19 remain significant. The COPD Foundation continues to work on programs to address the needs and concerns of the community. One example of this is the increasing efforts towards the Harmonicas for Health program, which offers people with COPD and other chronic lung diseases the tools to learn to breathe more effectively while playing music and joining with others in a fun community activity. One survey respondent wrote: "After the webinar on Harmonicas for Health I purchased the kit. I viewed the one follow up listen video, but would like more to continue learning and playing." We hope that making the Harmonicas for Health program more accessible through new educational videos and possibly an online community will help address the needs of our community.

Telemedicine

Telemedicine (also known as "telehealth") is the delivery of health care services via telephone and other electronic formats such as email and webcam communications. We asked survey participants about the method(s) of their COPD care visits during the 12 months prior to the pandemic. In response to this question, 38% of the respondents who answered the telehealth questions indicated that all of their visits were conducted in-person, 6% indicated that some of their visits were in person and some were via telehealth, and 2% indicated that all of their visits were conducted via telehealth. Since the start of the pandemic, we have seen an increase in telehealth use: 10% have indicated that some of their visits were in person and some were using telehealth, and 11% indicated that all of their visits were conducted via telehealth. Additionally, we are happy to see that nearly 18% of the respondents have reported satisfaction with telehealth and 13% anticipate receiving more of their COPD care over the next 12 months using telehealth. The figure below shows a "word cloud" of written responses to open-ended questions in the survey: the bigger the word, the more commonly it was reported.

Telehealth has allowed people to continue receiving health care without the need to visit a health care professional in-person. Although it has its limitations, it has become an essential part of our health care delivery system during the ongoing pandemic in an effort to stop the spread of COVID-19. The COPD Foundation is currently exploring the possibility of expanding telehealth to include important parts of routine care for the chronic lung disease community, such as at-home sputum collection for people who need laboratory sputum tests.

Looking Forward

The results of the COVID-19 survey series have been extremely informative and will help guide the Foundation in its COVID-19 relief efforts. Additionally, we are continuing to work with academic and industry experts to conduct in-depth analyses of survey data and we hope these analyses help further research that will improve care for people with chronic lung diseases during this challenging time.

We thank everyone who completed our surveys and shared their valuable experiences and opinions with us – we greatly appreciate it! Additionally, we thank and acknowledge our industry partners, AstraZeneca, GSK, Mylan, Teva, Pfizer and Theravance, who provided essential support for our COVID-19 efforts.