COVID-19 CF Study Results Summary

Dr Rini Bhatnagar

During the Covid-19 pandemic, CFI partnered with a research team led by Prof Patricia Fitzpatrick in UCD to investigate the impact the pandemic was having on people living with CF. Here, Dr Rini Bhatnagar, researcher with the team, describes what we learned from that study.

The COVID-19 pandemic significantly affected children with Cystic Fibrosis (CWCF) and people with Cystic Fibrosis (PWCF). Disruptions in healthcare, school closures, and changes to employment were a few of the many challenges faced. These challenges were felt by the whole population but potentially more so by those living with CF and their families. The aim of this study was to quantify the impact of the first six months of the pandemic on the lives of PWCF and parents of CWCF in terms of hospital visits, telemedicine use, education, employment, and mental well-being.

An online survey was conducted among PWCF and parents of CWCF, asking about their experiences during the pandemic in terms of hospital visits, precautions taken, impact on education, impact on employment, telemedicine, and mental health. A total of 119 PWCF and 123 parents of CWCF participated. The study was approved by the National Research Ethics Committee for COVID-19 (20-NREC-COV-090).

Results showed that 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). This deferral of hospital visits is concerning, as routine examinations are essential for early intervention in infective respiratory exacerbations and other CFrelated diseases.

The pandemic also led to a shift in how adults with CF and parents of CWCF connected with CF care staff, with online consultations and prescriptions via email being introduced. These methods were new to 47.6% of PWCF and 56% of parents of CWCF, and >80% found them helpful. Small numbers of both PWCF and parents of CWCF used online education or online physiotherapy classes, but those who did “found it very helpful”.

Employment of PWCF was also impacted, with many 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% per cent of parents of CWCF of children aged up to 4 years were hesitant to send them to crèches or playgroups, whereas a majority of parents (46% of primary and 45% of senior school CWCF), agreed that their children completely comprehended the extra measures to be taken during COVID-19.

The pandemic greatly impacted the mental health of both PWCF and CWCF. Younger PWCFs experienced more mental distress than the older group, experiencing increased levels of nervousness and tiredness. CWCF reported increased anxiety (26%), stress (33%), insomnia (11%), and irritability (11%). Families turned to activities such as watching TV, doing art and craft, gardening, and communicating with loved ones to cope with these challenges.

The COVID-19 pandemic has had a significant impact on the lives of PWCF, CWCF, and their families, and ongoing attention and support are needed to address the challenges they face. The study highlighted the likely need for more psychological support in future. Online consultations were found to be effective during the peak of the pandemic and could be useful to some extent in the future. Prescription via email was introduced successfully during the pandemic and could be continued for repeat prescriptions.

Visit the CFI website to read the full research paper publications: https://www.cfireland.ie/research/research-news/research-findings-the-impact-of-covid-19-on-childrenand-adults-with-cystic-fibrosis

Cian Greaney, PhD student from the University of Limerick, was awarded the Best Poster Prize at the European Cystic Fibrosis Society Conference in Vienna for his poster "Diet quality assessment in adults with Cystic Fibrosis - comparison to population dietary guidelines. A cross-sectional study". Cian works with Dr Audrey Tierney in UL on the Cystic Fibrosis Ireland and Health Research Board funded study. The team are in the final stages of analysis and Cian has shared the findings of his work with a presentation and poster at ECFS. Cian also recently presented at the CFI annual conference.

It was great to see Dr Rini Bhatnagar from UCD presenting results from the Irish Comparative Outcomes Study in CF (ICOS) at ECFS in Vienna. Rini gave two presentations highlighting the challenges of living with CF.