Experiences of Bronchiectasis/Nontuberculosis Mycobacteria (NTM) Patients during the COVID-19 Pandemic: Call for Survey Participants

Posted on October 13, 2021   |   
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This blog post was written by Arielle G. Hernandez, MPH, PhD

The COVID-19 pandemic has changed the world, transforming our lives in numerous ways with lasting impact. While the fight against COVID-19 is not yet won, there is at least a light at the end of the tunnel with reopenings occurring across the United States and in other countries. We are coming out of over a year in which we had to avoid gatherings, adhere to social distancing rules, and even now, we wear masks to keep ourselves and those around us safe.

These measures are particularly important to those with underlying respiratory disorders, whose awareness and concern was immensely heightened due to the disproportionate danger this deadly virus poses to patients with bronchiectasis, NTM, or other lung conditions. Despite the unique position and perspectives of this vulnerable population, there is very little description of the changes in care and treatment and clinical characteristics due to the pandemic, including missed clinic visits, use of telehealth, medication and lung hygiene changes, and ways patients are protecting themselves against COVID-19. Additionally, there is a need to capture detailed information on testing and infection with COVID-19, and associated symptoms and treatment. There are also limited epidemiological data on exacerbations suffered during this period and their management. Patient outcomes regarding physical, mental, and social health, as well as fears and anxieties around the disease are another essential layer to create a holistic assessment under these circumstances.

To fill these gaps in research and find better ways to help patients with lung conditions deal with COVID-19 in the short and long term, we designed a study utilizing online surveys with the main purpose of understanding some of the ways the pandemic is affecting clinical care, treatment, and health behaviors. Additionally, we aim to describe symptoms and access to testing for COVID-19 in patients like you.

If you are over age 18 and have a lung condition, you are invited to participate in a remote survey research study. We want to hear from people with bronchiectasis, NTM or Mycobacterium avium complex (MAC) infection, or other lung diseases.

We are asking you to complete electronic surveys at five time points over the next year. The first survey will take about 20-45 minutes to complete, but the follow-up surveys are shorter, and should only take about 15-25 minutes. You will get an email reminder when it is time for the next survey. You will be compensated for your participation in this study.

If you would like to participate, please start with the screening questions at this link: https://redcap.link/ohsucovid19lungsurvey

For more information, please contact: covid19lungsurvey@ohsu.edu

This research is led by Kevin Winthrop, MD, MPH, at Oregon Health & Science University, in Portland, OR. This study was approved by OHSU’s institutional ethics review board (IRB #22155).