The COVID-19 pandemic greatly impacted the lives of people with Cystic Fibrosis (PWCF) and children with Cystic Fibrosis (CWCF). A study aimed to understand the impact of the first six months of the pandemic on PWCF and parents of CWCF, including hospital visits, telemedicine use, education, employment, and mental well-being. 119 PWCF and 123 parents of CWCF responded to an online survey shared on social media and on the website of Cystic Fibrosis Ireland, following ethical approval from the National Research Ethics Committee for COVID-19.

Almost half of PWCF (47.5%) and over half of parents of CWCF (55%) deferred hospital visits due to fear of encountering COVID-19. Some units were closed (19.4% parents of CWCF; 11.5% PWCF.  The pandemic also led to a shift in how PWCF and parents of CWCF connected with CF care staff, with online consultations and prescriptions via email being introduced and welcomed by >80% of the participants . Employment of PWCF was also impacted, with the majority of PWCF working from home or not working while cocooning. Over one-third of employers (44.3%) were perceived as unsympathetic towards PWCF who were not working during the pandemic.   45%of parents of younger CWCF were reluctant to send their children to crèches or playgroups, while similar numbers  of parents (46% of primary and 45% of senior school CWCF), believed their children comprehend the extra measures required.

The pandemic has had a significant impact on the mental health of both PWCF and CWCF, with younger PWCF experiencing more mental distress than the older group, and CWCF experiencing increased anxiety (26%), stress (33%), insomnia (11%), and irritability (11%).

Overall, the study highlighted the likely requirement for more psychological support in future. Online consultations were found to be effective during the peak of the pandemic and may continue to be useful to some extent. Prescription via email was introduced during the pandemic and could be continued for repeated prescriptions through local pharmacies.

The full versions of the studies can be accessed below:

Impact of Covid-19 on children with Cystic Fibrosis

Impact of COVID-19 on adults with Cystic Fibrosis