Responding to COVID-19—the experience of an adult cystic fibrosis centre

Aim

To develop and report the considerations and strategies introduced to counter the threat of COVID-19 infection in a geographically dispersed CF population living in Queensland, Australia. Relatively few COVID-19 infections had been described globally in people with cystic fibrosis (CF) in the early months of the COVID-19 pandemic, but people with CF and especially those with severe disease were theoretically at high risk of death. The challenges faced included the geographically dispersed CF population with 60% of the ACFC patient population living >200 km distant from TPCH, the complexity of the disease itself combined with a substantial and understandable level of anxiety in the CF community around COVID-19.

Outcomes

The ACFC has been able to introduce innovations that we have now embedded into routine clinical care. The substantial increase in capacity for telehealth consultations using new videoconferencing platforms and ability to home monitor critically important objective measures such as lung function has transformed the CF service.

An additional major benefit has been the opportunity to videoconference into the patient’s home or workplace, which reduces the disruption to normal life and infinitely reduces the risks of cross-infection for CF patients who are high aerosol producers even with normal respiration.

Background

With potentially the most geographically dispersed cystic fibrosis population in the world, the Adult Cystic Fibrosis Centre (ACFC) at The Princes Charles Hospital cares for adult cystic fibrosis patients residing as far afield as the Northern Territory and Northern New South Wales. The ACFC had a limited telehealth program in place as the pandemic hit, and with the looming influenza season, the need to maintain clinical trials activity, the challenges of trans-state jurisdictions and keeping the CF population well-informed on rapidly changing clinical practices, the ACFC had to rapidly adapt.

Discussion

The single most important outcome of the ACFC’s innovative response to COVID-19 was the seamless transition to an almost completely virtual clinical service with enhanced home monitoring. We have conducted preliminary Patient Reported Experience Measures (PREMs) assessments in collaboration with Community and Consumer Engagement MNHS, which confirm general satisfaction with service delivery using telehealth and more recently, ACFC has used the new Telehealth Virtual Clinic platform, which will be assessed next with PREMs.

The weekly Facebook group exercise program is one exemplar of the new ACFC model of care that has been highly successful with 112 patients (35% of the adult CF population) regularly participating at each live session and the recorded sessions being viewed on average 288 times with the highest number of views being 428. Exercise is extremely important for airway clearance and maintenance of peripheral muscle conditioning in CF and this level of engagement was/is extraordinary.

Lessons learnt

The experience has equipped the ACFC to embed remote monitoring and videoconferencing into routine clinical care to a much greater extent than we had thought possible and we have become very much a hybrid virtual or physical CF centre as a consequence. Further innovations under study include the use of wearables to continuously monitor patient physiology and detect pulmonary exacerbations early (in collaboration with the QLD Digital Academy Research Group).