A UK survey on changes in managing people with cystic fibrosis during the COVID-19 pandemic

ABSTRACT

Background: With the COVID-19 pandemic crisis, in the UK guidance on shielding to protect vulnerable individuals included minimising face-to-face (FTF) contact and visits to hospital for people with cystic fibrosis (pwCF). We undertook a UK-wide survey to study how CF centres adapted their practice during this time. Method: We contacted CF nurses to explore service changes to routine outpatient care, emergency consultations, annual reviews (AR), and use of remote monitoring between March - July 2020. Results: Nineteen centres (13 adult) caring for 34% of the UK CF population replied (response rate 35%). Eleven (58%) ceased routine FTF appointments until virtual clinics were implemented, in 1 centre solely by telephone. Six centres suspended AR, the remainder integrating them into virtual or emergency FTF appointments. All noted reduction in hospital admission rates, citing better treatment compliance, reluctance to admission, effect of shielding and initiation of CFTR modulators. Twelve centres (63%) reported increased demand for psychology input. Departmental spirometry was only performed at F2Fclinics and all centres distributed remote spirometry devices to suitable pwCF, with training delivered F2F or remotely. Multidisciplinary team (MDT) meetings continued virtually at all centres. Fourteen (73%) reported an increase in home visits for blood tests and IV antibiotic management. To cope, 20% reduced support visits and extended TIVAD flush duration intervals. Nine continued existing research activity. Most centres reported initial technical issues with virtual clinics that were subsequently addressed and have incorporated virtual appointments into their care. Conclusions: Despite need for rapid service change, all centres continued to support their pwCF. Virtual clinics and MDT meetings were adopted by all centres within the UK and this service will strengthen in time.