Clinical outcomes of adults and children with cystic fibrosis during the COVID-19 pandemic.

BACKGROUND: The onset of the COVID-19 pandemic was associated with restricted community movement and limited access to healthcare facilities, resulting in changed clinical service delivery to people with cystic fibrosis (CF). This study aimed to determine clinical outcomes of Australian adults and children with CF in the 12-months following the onset of the COVID-19 pandemic. METHODS: This longitudinal cohort study used national registry data. Primary outcomes were 12-month change in percent predicted forced expiratory volume in one second (FEV1 %pred), body mass index (BMI) in adults and BMI z-scores in children. A piecewise linear mixed-effects model was used to determine trends in outcomes before and after pandemic onset. RESULTS: Data were available for 3662 individuals (median age 19.6 years, range 0-82). When trends in outcomes before and after pandemic onset were compared; FEV1 %pred went from a mean annual decline of -0.13% (95%CI -0.36 to 0.11) to a mean improvement of 1.76% (95%CI 1.46-2.05). Annual trend in BMI improved from 0.03 kg/m2 (95%CI -0.02-0.08) to 0.30 kg/m2 (95%CI 0.25-0.45) and BMI z-scores improved from 0.05 (95%CI 0.03-0.07) to 0.12 (95%CI 0.09-0.14). Number of hospitalisations decreased from a total of 2656 to 1957 (p < 0.01). Virtual consultations increased from 8% to 47% and average number of consultations per patient increased from median (IQR) of 4(2-5) to 5(3-6) (p < 0.01). CONCLUSION: In the 12-months following the onset of the COVID-19 pandemic, there was an improvement in the clinical outcomes of people with CF when compared to the pre-pandemic period.

Leadership during the COVID-19 pandemic: building and sustaining trust in times of uncertainty

Trust allows a person with less knowledge, power or ability to process complex information, to rely on another individual or institution to make decisions aligned with their well-being. [...]trust has historically been a cornerstone of clinical care and clinician–patient relationships, and healthcare systems and providers have traditionally been highly trusted. [...]where once the public received their health information primarily from health professionals, social media has allowed broad sharing of information via peers, which may be viewed as equally credible, posing a modern challenge for leaders.4 The so-called COVID-19 ‘infodemic’ on social media has disrupted the key tasks of crisis leadership.5 Nevertheless, in a pandemic, scientific and public health experts remain more trusted by the public than non-health leaders.6 The Trust–Confidence–Cooperation framework of risk management, developed by Earle, Sitgrist and Gutscher states that the community must have trust and confidence in its leadership for it to cooperate with restrictive public health measures.7 Pandemic responses and the related social and economic upheaval are huge change-management exercises, and there will inevitably be resistance to change.8 Herein lies the issue of trust. Emergency management and armed forces sectors stress the importance of regular organisational, sector, and cross-sector-level simulated exercises for building capability for crisis event management.12 Investment in public health, such as through the establishment of independent or government-managed national centres of public health or disease control, infectious disease physicians and disease outbreak response systems, provides a critical mass of available expertise. Examples from the Australian context include the Australian SPRINT-SARI (Short PeRiod IncideNce sTudy of Severe Acute Respiratory Infection) database collection of COVID-19 inpatient data across intensive care units16;other real-time aggregated case reports from international patient registries17;and the rapid development and continual evolution of treatment guidelines for COVID-19.18 It is vital that academics and governments publish their data as soon as possible, and many academic journals and media outlets are supporting this.19 International information sharing and global surveillance through research institutes such as John Hopkins University in the USA provide globally transparent, aggregated and real-time incidence and outcome data.20 Predictive data modelling can leverage this to provide leaders with a range of scenarios based on specific assumptions to help guide decision making.

The global impact of SARS-CoV-2 in 181 people with cystic fibrosis.

With the growing SARS-CoV-2 pandemic, we need to better understand its impact in specific patient groups like those with Cystic Fibrosis (CF). We report on 181 people with CF (32 post-transplant) from 19 countries diagnosed with SARS-CoV-2 prior to 13 June 2020. Infection with SARS-CoV-2 appears to exhibit a similar spectrum of outcomes to that seen in the general population, with 11 people admitted to intensive care (7 post-transplant), and 7 deaths (3 post-transplant). A more severe clinical course may be associated with older age, CF-related diabetes, lower lung function in the year prior to infection, and having received an organ transplant. Whilst outcomes in this large cohort are better than initially feared overall, possibly due to a protective effect of the relatively younger age of the CF population compared to other chronic conditions, SARS-CoV-2 is not a benign disease for all people in this patient group.

A multinational report to characterise SARS-CoV-2 infection in people with cystic fibrosis.

Information is lacking on the clinical impact of the novel coronavirus, SARS-CoV-2, on people with cystic fibrosis (CF). Our aim was to characterise SARS-CoV-2 infection in people with cystic fibrosis. METHODS: Anonymised data submitted by each participating country to their National CF Registry was reported using a standardised template, then collated and summarised. RESULTS: 40 cases have been reported across 8 countries. Of the 40 cases, 31 (78%) were symptomatic for SARS-CoV-2 at presentation, with 24 (60%) having a fever. 70% have recovered, 30% remain unresolved at time of reporting, and no deaths have been submitted. CONCLUSIONS: This early report shows good recovery from SARS-CoV-2 in this heterogeneous CF cohort. The disease course does not seem to differ from the general population, but the current numbers are too small to draw firm conclusions and people with CF should continue to strictly follow public health advice to protect themselves from infection.