24th March 2020
It has become clear over the last week that increasing numbers of our patients, parents and carers of our patients are calling for advice on how to manage concerns about the risks associated with SARS-CoV-2 infection. Over the weekend a group of us, led admirably by Helen Firth in Cambridge, corresponded to try to develop a fairly simple set of principles to communicate to patients and carers in response to the concerns they were expressing. It could be used to communicate directly with families, but also with colleagues and perhaps support groups who might contact you.
This is a difficult area, particularly with regard to children at risk. The literature on SARS-CoV-2 is in its infancy and there is very little specifically on the risks to children with pre-existing conditions, or complex needs, who constitute a large proportion of the population we care for.
The Xiaoxia Lu paper in NEJM here seems to be the only one that mentions children with coexisiting conditions. In a cohort of 1391 children assessed and tested in Wuhan between 28/01-26/02, 171 children were confirmed to have SARS-CoV-2 infection. Only three children required ventilation, but all had pre-existing condtions, (hydronephrosis, intussusception and ALL on chemo) so very little data. The single death was the child with intussusception. Not surprisingly the overwhelming majority acquired infection in their families.
A further paper from Wuhan on the epidemiology here - medRxiv preprint doi:confirms the value of social distancing as practiced there (LOCKDOWN!), in massively reducing the infection rate. It repeats the observation in the Xiaoxia Lu paper that the majority of childhood infections were acquired in the home. Francesca Forzano, Consultant Geneticist at Guys and St Thomas’s, very kindly put me in touch with Maurizio Genuardi, President-elect of the ESHG and a Clinical Geneticist in Rome. Sadly at the moment Italy is the epicentre of the SARS-COoV-2 outbreak, however Prof Genuardi didn’t have much more to add on the outcome for patients with Rare diseases who become infected with SARS-CoV-2, he wasn’t aware of any insights from colleagues in Northern Italy closer to the most severely affected areas either.
The document here is the result of the excellent work by Helen and colleagues. It tries to align wherever possible with official DoH advice, which it is critical we repeat in our messaging. It may help provide some information back to concerned patients and carers. If it is possible to put this up on you departmental websites, this may be helpful to patients and carers, and reduce telephone traffic to you.This is a very fast moving area, and very fluid, we will try to update the document as more specific information becomes available. If members have particular experience of insights to share that might help, I am happy to try to disseminate them. I hope you all remain well at this time, I know you will all be doing your best for patients and colleagues. I hope this document helps achieve this.
Eamonn Sheridan BSGM Chair