The COVID-19 pandemic has transformed nearly all parts of everyday life; from school and work to seeing friends and family, we have all had to adjust to completely new daily routines. For many people with CF, these routines also include regular clinic visits, which have changed significantly since the start of the pandemic. Under lockdowns and other restrictions, virtual CF care started to quickly replace standard in-person clinic visits. By ‘virtual care’ we mean any interactions you have with your CF health care team over the telephone or over video conferencing such as Zoom. If you’ve ever had a virtual visit, you likely know how much time they can save you compared with a normal clinic day at the hospital. At the same time however, your doctor can’t perform a full physical exam virtually, nor can they completely assess your lung function or weight, for example.

There are both advantages and disadvantages to virtual care, but to truly understand its impacts on people with CF, we wanted to hear directly from our community at the Toronto Adult CF Centre. Virtual care is new to both healthcare workers and patients so it’s important to keep track of its implications for patients, especially in the CF community where regular monitoring of health is vital. Thus, a study was recently done with the aim of gathering patient opinions, thoughts, and concerns about virtual CF care, which will help inform how care can be best provided moving forward.

Preliminary Study Results

Over 200 participants completed a survey about their experiences with virtual care and how they would like to see it implemented after the pandemic. Each participant’s responses were then securely linked to their clinical data from the Canadian CF Registry to get a better understanding of who participated. The survey included questions about whether people prefer being seen virtually or in-person, how comfortable they are with technology, any concerns they may have about lung function testing, and many others.

Those who participated were on average 38 years old, with an average lung function of 65.8%, three quarters of people were pancreatic insufficient and 39% had CF-related diabetes. Of the participants, 81% have had a virtual visit.

The study found that just over half of respondents wanted to continue with virtual care in some way, and that the optimal proportion of in-person vs. virtual clinic visits was 50%. Almost three quarters of people felt it was important for the virtual visit to occur at the booked time. Some of the main concerns participants had about virtual care were that lung function cannot be properly assessed and that it is more difficult to access the allied health team. Around 20% of participants worried their health may decline with virtual visits. The majority of participants were comfortable using technology and had reliable access to the internet. Interestingly, many people preferred and were more comfortable with in-person care over virtual care, which seemed to be in part due to concerns over a lack of lung function testing ability.

Next Steps

We will continue to analyze the data to see if we can determine if the preference for virtual care depends on the severity of disease. The results of this work will be presented at the North American Cystic Fibrosis Conference in Philadelphia in November 2022.
We want to thank everyone who participated in the survey and helped inform the research that shapes how care is provided at the Toronto Adult CF Centre.