COVID-19 and rheumatology

There’s lots of talk and uncertainty going around regarding the current COVID-19 pandemic and those classed as ‘higher risk’, which includes those with rheumatological conditions.

Please refer to the British Society of Rheumatology for the latest official rheumatology advice over the coming days and weeks: https://www.rheumatology.org.uk/News-Policy/Details/Covid19-Coronavirus-update-members

For paediatric rheumatology, the below pointers has been formulated by the Paediatric Infectious Diseases advisory group and Paediatric Rheumatologists in the UK.

This may well change as the situation progresses, but hopefully it may answer some of the questions young people and their families may have. I’ve also added some extra links and references for more information.

Look for the latest, official government advice

The situation is changing as the days progress. Therefore, you should monitor the Government’s website for their latest advice: https://www.gov.uk/government/topical-events/coronavirus-covid-19-uk-government-response .

You can also track cases per region on the COVID-19 dashboard from Public Health England, found here: https://www.gov.uk/government/publications/covid-19-track-coronavirus-cases

What is COVID-19?

Coronaviruses are a family of viruses that can cause anything from a common cold to severe acute respiratory syndrome (SARS) and Middle East respiratory syndrome (MERS). COVID-19 is probably, overall, more at the cold and flu-like end of the spectrum of these infections. To date, about 80% (80 in 100) of patients recover completely with no treatment. COVID-19 appears to affect children and adults differently. Data from China and Italy currently seem to show that the infection is milder in children than in adults although we do not yet understand exactly why this is the case. Certainly older people tend to have more other underlying illnesses than children which may play a part. In what we know so far, there are not a large number of deaths in children in China or Italy, even in immunosuppressed children or teenagers who we would expect to be more at risk.

Is it worse than influenza?

Every year, the World Health Organisation estimates about 3-5 million severe cases of influenza worldwide with 250,000 – 650,000 deaths. This would suggest that the risk from coronavirus is similar to that of seasonal flu for most people.

How is COVID-19 spread?

The disease can spread from person to person through small droplets from the nose or mouth which are spread when a person with COVID-19 coughs or exhales. These droplets land on objects and surfaces around the person. Other people then catch COVID-19 by touching these objects or surfaces, then touching their eyes, nose or mouth. People can also catch COVID-19 if they breathe in droplets from a person with COVID-19 who coughs out or exhales droplets.

How do we reduce the chance of infection and transmission?

Since it is spread by droplets, good hand hygiene is the top priority in preventing transmission of COVID-19, like most respiratory viruses. When out and about, alcohol based hand-gel can be used to sanitise your hands. Washing your hands, thoroughly and frequently, with soap and water throughout the day will also help reduce the chance of infection. https://www.nhs.uk/live-well/healthy-body/best-way-to-wash-your-hands/

We should all be taking action to reduce social interaction between people in order to reduce the transmission of COVID-19 by social distancing. Read the Government advice on social distancing here: https://www.gov.uk/government/publications/covid-19-guidance-on-social-distancing-and-for-vulnerable-people/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults

Should we be wearing masks?

Masks are generally not effective. Most people do not have appropriate training for a good fit, they need replacing regularly and there is probably greater risk of contaminating your face from your hands adjusting a mask than the benefit from wearing one. Some countries do recommend a mask if a person definitely has coronavirus to help reduce spread, this is not the case in the UK at the moment. The exception is a healthcare setting when you are given a mask, shown how to wear it and it is disposed of appropriately.

Is my child / young person specifically at risk as they are on immunosuppressant medication for their rheumatological condition?

Being on some medications, particularly steroids and / or biologics/biosimilars (such as etanercept, adalimumab, tocilizumab, abatacept, infliximab, rituximab) does cause a greater amount of immunosuppression and therefore may increase risk, although the greatest risk actually comes from being exposed to the virus, which is why the hygiene measures are so important. Many children and young people are on methotrexate. Whilst this does not cause as much immunosuppression, much of this advice would also apply to them.

Should my child / young person stop taking the medications?

No. Current advice is to continue taking all medications as prescribed. Stopping may cause a flare of disease requiring more intensive treatment. Contact your paediatric rheumatology team if your child is currently on steroids for possible dose adjustment. If you are already taking non-steroidal anti-inflammatory drugs (NSAIDs) you are safe to continue using them.

This is an additional point that I have added about the use of ibuprofen, after lots of confusing and conflicting messages have been posted online. Clarification from the BBC can be found here: https://www.bbc.co.uk/news/51929628 . The NHS website has changed its advice to say that while “there is currently no strong evidence that ibuprofen can make coronavirus (COVID-19) worse… until we have more information, take paracetamol to treat the symptoms of coronavirus, unless your doctor has told you paracetamol is not suitable for you.” The NHS also says that people who are already taking ibuprofen on the advice of a doctor, should not stop taking it without checking first.

This point has been added here from the British Society of Rheumatology guidance, pertaining to the question ‘Should patients who become infected with the virus cease their medication?’ which says: If patients develop symptoms of any infection, established practice should be followed and immunosuppressive therapy paused for the duration of the infection and until they feel well, in consultation with their rheumatology team. For those on glucocorticoids (steroids, prednisolone), the expectation is that treatment should not be stopped abruptly and advice should be sought from their treating team.

Should my child / young person go to school? Should we be self-isolating until this is over?

As of Monday 16 March 2020, the Government advice is that all children and adults in the UK avoid all non-essential contact with people, working from home if possible and avoiding public spaces. Subsequent advice on Tuesday 17 March 2020 states that all people aged 0-69, who have an underlying health condition and are instructed to get a flu jab each year should not be in large social gatherings. Therefore according to this advice, even though currently many schools are staying open, children who are on immunosuppressive treatment should not be in large social gatherings, and for children this could be interpreted to include school. Government advice is changing almost daily, therefore recommendations may change. On a positive note, COVID-19 disease in children is reported to be mild, even in those who are immunosuppressed.

https://www.gov.uk/government/publications/covid-19-guidance-on-social-distancing-and-for-vulnerable-people/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults

Here is what the British Society of Rheumatology says to ‘Should young patients be taken out of school to reduce the risk of infection?’

Schools in the UK currently remain open, aside from a small number who have suspected or confirmed cases of the virus. While there is no specific advice on whether immunosuppressed children should remain at home, the Government has published advice on social distancing, with a particular focus on those with underlying health conditions. Following this advice, children who are on immunosupressive treatment should not be in large social gatherings, such as school environments.

What about my other children? Should they stay off school?

It is appreciated how difficult this is for you as a family, but at this point that is for you and your family to decide in consultation with your child’s school, taking into account each sibling’s individual medical situation.

I think my child / young person may have been in contact with someone with COVID-19, what do I do?

If you believe you or your child / young person has been in contact with someone tested positive or symptomatic from a known outbreak area, first of all check the Government website https://www.gov.uk/guidance/coronavirus-covid-19-information-for-the-public or contact NHS 111 / NHS 24 for the latest advice.

If you have been told to isolate by NHS 111 / NHS 24 or you are symptomatic and NHS 111 / NHS 24 have given advice, you should also contact your local paediatric rheumatology team to see if they need to provide input.

I think my child / young person may have COVID-19 – what should I do?

Call NHS 111 / NHS 24 and follow their advice and that on the NHS website: https://www.nhs.uk/conditions/coronavirus-covid-19/

Contact your paediatric rheumatology centre by phone or email to update them and for any input. Do not attend without agreement from the centre.

Keep up to date

As the number of cases of COVID-19 continues to rise in the UK, this advice may change and you should follow the general advice given by the Government or look on the NHS website: https://www.nhs.uk/conditions/coronavirus-covid-19/

This website: https://www.gov.uk/guidance/travel-advice-novel-coronavirus gives the current situation of the outbreak in the UK and abroad and provides specific advice for those travelling to and from affected countries.

A helpful overview of 10 recommendations for children and young people with rheumatic conditions, developed by UK and European paediatric rheumatology colleagues can be viewed below.

https://wordday.org/wp-content/uploads/2020/03/WORDday2020-CORONA-PReS-guidelines.mp4

Further links

Written by Simon R. Stones

Simon R. Stones BSc (Hons) MMRS is a multi-award-winning patient advocate, consultant, researcher, and writer from Manchester in the United Kingdom. He is recognised as one of the top 100 most influential people with disabilities in the UK, and was the winner of the international WEGO Health Award for Patient Healthcare Collaborator in 2017. He is a passionate advocate and ambassador for people living with a variety of health conditions, inspired and empowered by his own journey with juvenile arthritis, fibromyalgia, and inflammatory bowel disease since childhood, as well as a carer for his late mum. He is currently an Associate Fellow of the Royal Commonwealth Society and a trustee of RAiISE. He is the former President of the European Network of Fibromyalgia Associations (ENFA).

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