What are the current recommendations for people with CF during this pandemic?
We recommend checking the Cystic Fibrosis Foundation's Q&A website for weekly updates.
When will clinics be open again? Will they look the same? What about PFTs?
As part of initial phases of reopening outpatient care, we have begun to start seeing patients again in clinic. We are learning every day how to continue to provide needed medical care, while complying with social distancing and ensuring patient, family and staff safety. This means fewer patients in clinic as well as fewer team members. We are refining these processes daily and appreciate everyone’s patience. We will continue to provide services via telemedicine as we ramp up our clinics. Even back in clinic, some team members may continue to work with you via telemedicine in an attempt to decrease the number of people in clinic.
All visitors to Cincinnati Children’s (patients, parents, family members, employees) will be screened when they enter the building. All visitors and employees are required to wear a mask, which will be provided, at all times at Cincinnati Children’s. Homemade cloth masks are acceptable for patients and families. Allow extra time for clinic visits to accommodate these screens.
When it comes to pulmonary function tests (PFTs), we are taking every precaution to ensure the safety of patients and employees. Spirometry (the most common PFT that you are all used to) is considered an “aerosol generating procedure” – meaning that if someone is infected with coronavirus, the test itself could deliver viral particles into the air. Because of this, and per recommendations from the American Thoracic Society, we are not performing PFTs unless a patient has tested negative for COVID-19. We realize this makes things a bit complicated, and with testing still in limited supply, we continue to plan ways to get this done efficiently, responsibly and safely. While the details are still being worked out, you may be asked to have a COVID-19 test 72 hours PRIOR to your visit / PFT at a Cincinnati Children’s community testing site. The availability of same-day COVID-19 testing at Cincinnati Children’s is extremely limited, so our goal would be to reserve these for those absolutely necessary. Again, bear with us as we finalize these details, and we’ll communicate with you prior to your visit.
I heard the CF Foundation is supplying home spirometers (PFTs) – is this true? How do I get one?
Yes, the CF Foundation has announced that it will be able to supply patients with CF home spirometers so they can do PFTs at home. However, each center is allotted only enough devices to supply to a small fraction of our patients. We have developed criteria to help prioritize how to distribute these. While we cannot provide these for the majority of our patients, we are encouraged that our PFT lab is also in the early phases of reopening. We anticipate that we will continue to learn how to do this safely. Our goal is to continue to monitor lung function in the safest way, and we are working hard to create this plan.
Will Liberty Campus still be available for outpatient visits?
For now, due to issues around airflow in the current pandemic, we unfortunately are unable to perform PFTs at the Liberty Outpatient Clinic for people with CF. While we figure this out, we are going to ask that all patients with CF that perform PFTs as part of their outpatient visits be seen at the Burnet Campus. We may begin to explore seeing younger patients at Liberty, though we are still working out logistics. Our goal would be to eventually have CF clinic access at Liberty Campus as soon as we can do this safely.
What is the experience for people with CF and COVID-19 infections?
It is still early, and we are learning more and more each day. A recent study was published in early May describing 40 patients with CF who contracted the novel coronavirus. While the study is small, data were encouraging and can be found here.