Highlights from COVID-19 Survey #2: Pandemic Impact on the COPD Community

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

The COPD Foundation (COPDF) continues to monitor the impact of coronavirus disease 2019 (COVID-19) on the COPD and other chronic lung disease communities. We are using surveys to learn how the ongoing pandemic is affecting our community. The results will help us develop resources and programs that address the needs of our community of patients, families, caregivers, health care professionals and researchers. We keep the community informed through a dedicated webpage on COVID-19, and other regularly updated resources.

On March 29th, we launched the first of a series of global surveys to evaluate the experience of individuals affected by COPD and related lung diseases during the COVID-19 pandemic. As planned, we reported important results of Survey #1 in a COPD Digest post, which can be found here. Survey #2 was available online between April 26th and May 31st and was completed by 776 respondents. It included the same questions from Survey #1 as well as more detailed questions. Below are some highlights of the results from respondents who reported having COPD. It is important to note that not all respondents answered every question, so the percentages reported reflect only the respondents who answered that particular question.

Profile of Respondents with COPD

There was a total of 595 who answered the survey and reported they have COPD, chronic bronchitis or emphysema, equating to 77% of all who answered Survey #2. The majority (95.4%, n=564) of those with COPD were from the United States. Those not from the United States were from Europe (2.4%, n=14) or “Other” locations (2.2%, n=13): Canada, India, Pakistan, Australia and England.

Given the overlap between COPD and other lung conditions such as bronchiectasis, we also asked whether or not they had bronchiectasis, nontuberculous mycobacterial (NTM) lung disease, or alpha-1 antitrypsin deficiency. Those with COPD also reported having bronchiectasis (16.0%, n=92); NTM lung disease (1.9%, n=11); both, bronchiectasis and NTM (4.4%, n=25); or alpha-1 antitrypsin deficiency (3.5%, n=21).

We are still analyzing the data on COPD medicines but have learned that 91.3% (n=459) of those with COPD were on COPD medicines at the time of survey completion. The survey included a question about supplemental oxygen use, which gives us an idea of the COPD disease severity in those answering the survey. We found that nearly half of those reporting COPD (48%, n=211) were using supplemental oxygen: 99 of them reported using it over 24 hours, 53 only at night, 17 only during physical activity, and 42 both at night and with activity.

Presence of COVID-19 in those reporting COPD

Thirty-seven (6.4%) of those with COPD were told by a health care provider that they had COVID-19. The COVID-19 symptoms most frequently reported were shortness of breath or difficulty breathing (reported by 88% of those reporting COVID) and cough (reported by 71% of those reporting COVID).

Of those who were told by a health care provider that they had COVID-19, 16 (44%) were actually tested for COVID-19, and 5 were told they could not be tested for COVID-19. Of those who were tested, only 2 tested positive and both of them were hospitalized for over a week but not admitted to the Intensive Care Unit. As of the time of survey completion, one of those reporting COVID had recovered and one had not yet recovered.

These results are similar to what we saw in Survey #1 suggesting low incidence of COVID-19 in these people, where many people report staying home and practicing social distancing. Alternatively, this can be due to less testing of people with COPD for COVID-19. It is encouraging to see that few were hospitalized.

COVID-19 Impact on those with COPD

Nearly 98% (553) of all COPD respondents expressed concern for COVID-19, with 58% reporting they were “extremely concerned” about COVID-19. Similarly, and not surprisingly, over 95% (538) reported that their COPD affects their concern for COVID-19.

The majority of COPD community members have made changes to their daily lives as a result of the ongoing COVID-19 pandemic. The most frequently reported changes were changes to the way they interact with family/friends, avoiding leaving the house, and changing the way they interact with health care providers. Notably, we learned that 22%, or 77 of those who reported changing the way they interact with health care providers, said they have started avoiding visits to the emergency department in situations for which they would have gone to the emergency department before the COVID-19 pandemic. This is a concern. Avoiding treatment for a COPD exacerbation may put those individuals at risk for a worse outcome.

Figure: This chart demonstrates the changes those with COPD have made to their daily lives and how frequently these changes were reported.

Employment Status of Those with COPD

The workforce has been tremendously impacted by the ongoing pandemic, so we wanted to learn about the COPD community members’ employment status as well as whether or not they were considered "essential workers". We found that 79 of them consider themselves as "essential workers" (53 are working, 26 not working) and 35 are working but considered themselves “non-essential workers.” Of all the group with COPD, 20% of them reported still working at the time of the survey completion (some from home). Additionally, 63% reported not being employed at the time of survey completion, and 18% reported an employment status of "Other," citing retirement, disability, and working from home in their comments. Employment information will help inform our public policy and advocacy efforts for COPD community members in the workforce.

Access to Supervised Exercise and Pulmonary Rehabilitation

Research has shown that doing pulmonary rehabilitation can improve the quality of life of people with COPD and other lung diseases and prevent hospitalization. However, the ongoing pandemic has significantly affected the availability of supervised exercise programs, and pulmonary rehabilitation programs. In response to the question on pulmonary rehabilitation, 28% (133) reported having completed a pulmonary rehabilitation program in the past, and 7.4% (35) reported actively participating in a pulmonary rehabilitation program before it was closed due to the COVID-19 pandemic. Based on text responses provided via comments in the survey, there was concern about access to exercise programs although some were able to do telehealth pulmonary rehabilitation. Given this information, the COPDF has submitted a grant application to work with other groups to focus on improving the efficiency of virtual/telehealth pulmonary rehabilitation with peer coaching support. We also partnered with experts and added information to our website about maintaining an exercise routine at home.

Airway Clearance Techniques

Lung hygiene is very important in people with COPD and other lung diseases that have large amounts of airway mucus (phlegm). Based on comments in COPD360 we are aware of concerns about the risk of spreading the virus while performing airway clearance techniques. The survey indicated that 60% (356) of those with COPD reported doing at least one airway clearance technique (ACT) including mostly huff cough (reported by 43% of the respondents to this question) but also positive expiratory pressure, oscillating system, exercise, vibratory vests, and nebulized hypertonic saline. Based on these answers, we are planning educational activities on doing airway clearance techniques while reducing potential COVID-19 exposure to others, including a dedicated COPDF ACT web page currently under review by experts.

What Would Help Those with COPD Cope Better with COVID-19?

The most common response to this question was the need for help with selecting/getting the best face coverings/masks. This has been addressed in the April 3rd update of the COVID-19 Blog post being updated regularly. It has also been addressed in a recent webinar on "Maintaining Good Health Through COPD Management". Other needs included: guided physical therapy/pulmonary rehab/exercise at home; ways to get household supplies; access to virtual support groups, book clubs, guided meditation; assistance with writing a COPD action plan; assistance with technology, video calls, and/or social media; and assistance carrying oxygen tanks in/and out of home (shown in the table below). Nearly 20% reported a need for "Other" resources and provided further details. A few themes found in comments include the need to address depression, struggling with physical distancing, isolation and the need for access to accurate, simply written information for people with COPD.

Looking Ahead

The results of this second survey have been extremely informative and will assist the Foundation in future research on how the pandemic is affecting the COPD community. We are working with the COPDF BRIDGE project participants, as well as academic and industry experts to conduct in-depth analyses of survey data. We hope that these analyses will result in published articles that help everyone provide better care for people with COPD during this challenging time.

We are extremely grateful to everyone who has completed these surveys and shared their experiences with us, and to our Industry Partners AstraZeneca and GSK for funding Survey #2. We will continue to update you as additional analyses are completed. We plan to launch a modified version of this survey "Survey #3" in late Summer. We hope that Survey #3 will allow us to continue learning how this pandemic is affecting our community as stay-at-home orders and similar regulations are relaxed and businesses re-open.