Written by: Delia Prieto, Danielle Boyce, Bill Clark, and Ruth Tal-Singer
The COPD Foundation (COPDF) continues to monitor coronavirus 2019 (COVID-19) and the way it is impacting chronic lung disease communities. We are providing resources to the community based on needs expressed through a series of surveys we are conducting throughout the COVID-19 pandemic. The COPD Foundation COVID-19 resources include a blog post being updated regularly, a series of live webinars (which are recorded and transcribed), a lengthy list of questions/answers important for the community, and important guidance information from the Centers for Disease Control and Prevention (CDC).
In late March, we launched a global survey aiming to evaluate the experience of individuals affected by chronic lung diseases during the COVID-19 pandemic. This was the first of a series of surveys we are deploying to learn about how the COVID-19 pandemic is affecting our communities. We reported some highlights of Survey #1 in a COPD Digest post, which can be found here. In late April, we launched Survey #2, which included the same questions from Survey #1 as well as more detailed questions about the effects the pandemic is having on the community. The survey was live for a little longer than one month and was completed by 776 respondents.
Below are some highlights of the results from respondents who reported having bronchiectasis and/or nontuberculous mycobacterial (NTM) lung disease. For the purposes of this article, we will refer to NTM Lung Disease as ‘NTM’. Additionally, 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 Bronchiectasis and/or NTM
There was a total of 211 respondents who indicated they have bronchiectasis and/or NTM. Of these 211 respondents, 130 of them have COPD and 81 of them did not have COPD. The table below delineates the breakdown of respondents.
The majority of the bronchiectasis/NTM survey respondents were from United States (91%, 190). Those not from the United States are from Australia, Canada, Europe, Israel, New Zealand, and Pakistan.
Presence of COVID-19 in Bronchiectasis and/or NTM Respondents
Nineteen (9%) of the Bronchiectasis/NTM respondents were told by a health care provider that they had COVID-19, 17 of which had COPD and 2 of which did not have COPD. The COVID-19 symptoms most frequently reported were shortness of breath or difficulty breathing (reported by 89% of respondents who reported symptoms of COVID-19) and cough (reported by 67% of those who reported symptoms of COVID-19).
Eleven individuals (58%) who were told by a health care provider that they had COVID-19 were tested for COVID-19, and two were told they could not be tested. None of those tested were positive for COVID-19.
It is encouraging to see that few individuals have reported suspected COVID-19 infection; however, there is still not enough data to determine the incidence of COVID-19 in this community. We hope that future research will assist in determining this information.
COVID-19 Impact on Bronchiectasis and/or NTM Respondents
Ninety-six percent (203) expressed concern for COVID-19, with 59% of the respondents indicating that they were ‘extremely concerned’ about COVID-19. Similarly, and not surprisingly, 93% (196) reported that their lung condition affects their concern for COVID-19. This is similar to what we observed in the survey when analyzing the results for individuals with COPD.
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 those made 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 nearly 20% (27) of those who reported changing the way they interact with health care providers indicated that they have started avoiding the emergency department in situations which they would have gone to the emergency department before the COVID-19 pandemic. This is a concern, as avoiding treatment for an exacerbation may put those individuals at risk for a worse outcome.
Employment Status of Respondents with Bronchiectasis and/or NTM
To say that the workforce has been affected by the COVID-19 pandemic is an understatement. Given the significant impact, we sought to learn about community members’ employment status and employment type (i.e. whether or not they were considered “essential workers”). We found that 26 of the respondents consider themselves “essential workers” (16 working, 10 not working at the time of survey completion). Additionally, 22 were working at the time of survey completion but were considered “non-essential workers.” Of all the bronchiectasis/NTM respondents, 18% of them reported still working at the time of the survey completion. Additionally, 65.4% reported not being employed at the time of survey completion, and 21% reported an employment status of “Other”. Those who selected an “Other” employment status provided comments indicating they were retired, on disability, or working from home. This section of the survey will inform our public policy and advocacy efforts related to advocating for community members still in the workforce.
Access to Supervised Exercise and Pulmonary Rehabilitation
Participation in pulmonary rehabilitation has been associated with improved quality of life for people with chronic lung diseases. Unfortunately, the ongoing pandemic has significantly impacted the availability of such programs. Thirty-five of the bronchiectasis and/or NTM respondents reported having completed a pulmonary rehabilitation program in the past, and 10 reported actively participating in a pulmonary rehabilitation program before it was closed due to the COVID-19 pandemic. Our analysis of the comments provided by respondents showed us that there was a concern about access to supervised exercise programs but that some of the respondents were able to participate in a pulmonary rehabilitation program via telehealth. In an effort to address these immediate community needs, we have added information to our website about maintaining an exercise routine at home. Additionally, in an effort to address the long-term community needs, we have collaborated with health care partners in the field to submit a grant application with the purpose of improving efficiency of virtual/telehealth pulmonary rehabilitation with peer coaching support.
Airway Clearance Techniques
The performance of lung hygiene measures is extremely important in individuals with bronchiectasis and/or NTM, as it helps clear the airways of mucus that can cause recurring lung infections. Amid the ongoing pandemic; however, there are significant concerns related to the potential exposure of COVID-19 associated with patients’ performance of airway clearance techniques (ACTs). We found that 76.8% of the respondents use at least one airway clearance technique in their disease management efforts. The most common ACT reported was huff cough, reported by 37% of the respondents who perform ACTs. Respondents also reported use of positive expiratory pressure oscillating system, exercise, vibratory vests, and nebulized hypertonic saline. In an effort to address the concerns about performance of ACTs and potential exposure to COVID-19, we are planning educational activities to help inform the community about how they can perform their ACTs while reducing potential COVID-19 exposure to others.
What Would Help Bronchiectasis and NTM Respondents Cope Better During the COVID-19 Pandemic?
Assistance with selecting the best face mask/covering was most frequently selected in response to this question. In an effort to address this need, the COPD Foundation included information on face masks/coverings in the April 3rd update of the COVID-19 Blog post being updated regularly. Additionally, this topic was also recently addressed in the 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. The table below delineates the needs reported by the bronchiectasis/NTM respondents, and how frequently they were reported.
The results of this second survey have been extremely informative and will assist the Foundation in furthering research on how the pandemic is affecting the COPD and bronchiectasis/NTM communities. We are collaborating with partners from academia and industry to conduct in-depth analyses of survey data, which we hope will be utilized to publish articles that will improve care for those affected by these lung diseases.
We are extremely grateful to everyone who has completed these surveys and shared their experiences with us – please know that you are contributing to important research. We would also like to acknowledge the support of AstraZeneca and GSK, who funded Survey #2. We will continue to update you as additional analyses are completed. We plan to launch a modified version of this survey (as Survey #3) in late Summer, and we hope it will allow us to continue learning how this pandemic is affecting our communities while the stay-at-home orders and similar regulations are relaxed and businesses re-open.