Survey on the impact of the COVID-19 pandemic on children under 11 years old who have Down Syndrome

This survey is designed to understand how the pandemic has affected children who have Down Syndrome by asking parents/carers about their child’s experiences. The project was developed by University College London in partnership with the Down Syndrome Association and the Trisomy 21 Research Society, and is led by Professor Monica Lakhanpaul.

Please share the link below with your networks:

Survey on the impact of the COVID-19 pandemic on children under 11 years old who have Down Syndrome (ucl.ac.uk)

Covid-19 and Down Syndrome

Information about Covid-19, how it may affect people who have Down syndrome and resources for health professionals and families.

Please see the latest update related to Covid-19, below. Please see here for general information.


T21RS statement regarding COVID-19 booster vaccination for individuals with Down syndrome.

Analysis of various data sources collected during the COVID-19 pandemic has established that individuals with Down syndrome are at increased risk for both hospitalisation and mortality after infection with SARS-CoV-2. Adults with Down syndrome were amongst the highest risk groups for mortality. Furthermore, there have been concerns that, when admitted to hospital during peak infection periods and when demands on resources are high, people with disabilities and long-term conditions may not be prioritised for access to scarce resources such as respiratory ventilation or intensive care beds.

It has been the clinical experience of many Down syndrome clinics in different countries that COVID-19 vaccines can be safely given to children (from age 12) and adults with Down syndrome. There are also reasonable indications that full vaccination offers significant protection against the poor outcomes associated with infection in people with Down syndrome. However, based on our understanding of the immune response in Down syndrome, including reduced numbers of and differences in memory B cell responses, and previously published studies on the immunological response of those with Down syndrome to other vaccines, their antibody response to vaccination may be less robust when compared to peers without Down syndrome.

We therefore recommend that individuals with Down syndrome should be amongst those prioritised for booster vaccination for persistent production of antibodies against COVID19 antigen. There have been some indications of additional benefit by combining vaccines from different sources (e.g. Pfizer and Moderna, or Moderna and AstraZeneca) to promote better immune responses based upon studies in the general population, but any booster is preferable to none.

Selected references/ further reading:

30.11.2021


COVID-19 is an infectious disease caused by a type of coronavirus (SARS-CoV-2) not previously seen in humans, primarily affecting the respiratory system. As it is only recently identified we are still learning about COVID – 19. We have included  here information about  COVID-19 and how it relates to people with Down syndrome. The information will be updated as more becomes available.

Research, published October 2020, indicates that people with Down Syndrome are at higher risk of severe outcomes from COVID-19. Research published in the British Medical Journal  and Annals of Internal Medicine, found increased risk of hospitalisation and serious illness in adults (aged 18 and above) with Down syndrome. There were similar findings in a study published  in Genetics in Medicine .The increased risk is age related, and mainly relates to older adults and those with other medical conditions that also increase the risk from COVID-19. Research published July 2021 in the British Medical Journal also showed increased risks for people with Down syndrome.

This  information led to the U.K. Department of Health and Social Care issuing new guidance on 4th November 2020 to include adults with Down syndrome on the list of those considered clinically extremely vulnerable to COVID-19. This advice had a significant impact on people’s lives and those affected, their families and carers were advised to discuss the implications of this with their GP or other health care professional, taking into account their individual health needs and personal circumstances.

The Trisomy 21 Research Society (T21RS)  has published findings of an international study which has similar findings but does also include children. The data on children and young people is still  limited, but suggests that children with Down syndrome are not at the same increased risk as older adults, and should not be included in the clinically extremely vulnerable list , except for a very small number who may be included because of  an associated medical condition, (essentially only those on immunosuppressive drugs or severe immunodeficiency). COVID -19 shielding advice for children and young people has been written by the RCPCH describing which children should be included in the highest risk groups. T21RS are also undertaking research into COVID-19 vaccines.

The majority of children and young people with Down syndrome will not be in those high risk groups and should still be able to attend school or college,  following government advice on use of face masks, handwashing, avoiding exposure to those known to be affected and social distancing.  Details on NHS website.

It is important for people who have Down syndrome and their families to understand the implications of the government advice. This is available in an easy read format on the Down’s Syndrome Association, Down’s Syndrome Scotland  and Down Syndrome Ireland websites.

People with Down syndrome may be at greater risk of other infections aside from COVID-19. It is therefore also important to maximise other measures recommended to minimise the risk of infections including routine and additional immunisations, and treatment of other medical problems that may predispose to infection.

There is no current evidence that the new UK variant of COVID-19 strain is worse than the previous COVID-19 strain, in terms of severity of illness or risk of death. However, it does spread much more easily, and therefore it is really important to take strict precautions to prevent the spread of the virus. This includes maintaining strict hand hygiene, social distancing and wearing a mask.

As adults with Down syndrome are included in the list of people classed as clinically extremely vulnerable, they should be offered Covid 19 vaccine according to the prioritisation set out by the UK Joint Committee on Vaccination and Immunisations.

Further information can be found in the Immunisation against infectious disease Green book Chapter 14a and the RCPCH Coronavirus vaccination programme statement.

As the Covid-19 pandemic develops we will develop a greater understanding of how the disease affects different groups of people, including those with other health conditions and for those who have Down syndrome. We will endeavour to keep health professional colleagues working with people who have Down syndrome with information as it becomes available.

Below we have collected some resources that we feel are useful.

General advice

Up to date advice is available via the NHS website.

Advice also available via UK Government website.

Advice for Health professionals

Comprehensive advice has been prepared by the Royal College of Paediatrics and Child Health COVID-19 guidance for paediatric services.

Resources for Community Paediatricians are available on the British Association for Community Child Health website.

NHS England has produced a Clinical guide for front line staff to support the management of patients with a learning disability, autism or both during the coronavirus pandemic – relevant to all clinical specialities.

Article on Guidance for the Treatment and Management of COVID-19 Among People with Intellectual Disabilities

Advice for parents, carers and people who have Down syndrome

There is useful information on the website of the Down’s Syndrome Association ( DSA) which includes an easy read guide about coronavirus , and advice on hand washing.

There are two recent  DSA Journal articles Preventing infection in children with Down’s syndrome and Recognition of Serious Illness in Children with Down’s syndrome.

Advice on infections is also included in the new 2020 version of the Personal Child Health Record DS insert on pages 9 and 16.

Similar useful information is also available on Down Syndrome Ireland website

General information about Coronavirus for parents can be found here

Wide ranging advice, with links to national and regional resources , and  helplines has been compiled by the Disabled Children’s Partnership

Up-to-date Government guidance and information for practitioners and parents and carers on issues related to education, health and social care to help support  disabled children during the Coronavirus outbreak has been collated by the Council For Disabled Children

Include Me Too have developed COVID 19 Hospital Communication Passport for disabled children, young people & adults .Providing vital information to support their safety, dignity, access, communication, sensory, physical & personal care needs.

If you have any further suggestions of information about COVID-19 or useful resources we should put on the website please email info@dsmig.org.uk

Vaccinations for children

The JCVI is advising that children at increased risk of serious COVID-19 disease are offered the Pfizer-BioNTech vaccine.

That includes children aged 12 to 15 with severe neurodisabilities, Down syndrome, immunosuppression and multiple or severe learning disabilities.

The JCVI also recommends that children and young people aged 12 to 17 who live with an immunosuppressed person should be offered the vaccine. This is to indirectly protect their immunosuppressed household contacts, who are at higher risk of serious disease from COVID-19 and may not generate a full immune response to vaccination.

The T21RS data suggests that young people who have Down syndrome are at a greater risk of developing complications related to COVID-19, although the numbers were low and the evidence relates to data collected during the first wave of COVID-19 i.e.  till June 2020.

The vaccine is being offered to decrease the severity of COVID-19  disease, if contracted.

Real-world data on the safety of COVID-19 vaccines in children is currently limited, but there have been extremely rare reports of myocarditis (inflammation of the heart muscle) and pericarditis (inflammation of the membrane around the heart) following the use of the Pfizer-BioNTech and Moderna vaccines in millions of younger adults. We do not know why this occurs, an underlying cardiac condition does NOT make the person more vulnerable.

The vaccine prevents severe disease, but does not necessarily prevents anyone from getting COVID-19 or PIMS.

It is important to reassure families that being offered vaccination is not equated with being Clinically Extremely Vulnerable. The vast majority of children with severe disabilities are not CEV and it is important that the families do not go back to shielding and children not going to school. The decision if a child/ young person is clinically extremely vulnerable is dependent on their underlying associated medical condition e.g. receiving chemotherapy or immunosuppressive medication etc.

We are aware that children and young people with a severe and moderate intellectual disability, would find it a challenge to maintain measures to prevent contracting COVID-19,  e.g. tolerance to wear a face mask and strict hand hygiene measures and in addition may find hospitalisation a more challenging experience. It is for these reasons young people with a significant intellectual disability are being offered the vaccine.

We are unaware of any deaths from COVID-19 in children with Down syndrome in the U.K.

For further information visit the JCVI site https://www.gov.uk/government/news/jcvi-issues-advice-on-covid-19-vaccination-of-children-and-young-people

Last update 30.11.21

Next DSMIG meeting Thursday 17th June 2021 to be held jointly with BACD and BSPGHAN at the RCPCH online conference

Register now

The next DSMIG meeting will be held as part of the RCPCH online conference which has now been rescheduled for June 2021.

This year there will be a joint meeting with DSMIG, BSPGHAN and BACD with a general theme of gastrointestinal issues in children who have Down Syndrome and also parent perspectives of having a child with disability during COVID. I am sure a lot of information and experiences can be generalised to other children that we manage in our clinical practice.

The date of the meeting is Thursday 17th June 2021 15:30-18.00 and details for registration will be on the college website.

https://www.rcpch.ac.uk/news-events/rcpch-conference

Please see the attached RCPCH Flyer June 2021 Please do share this flyer within your local networks.

World Down Syndrome Day (WDSD) 2021

DSMIG supports World Down Syndrome Day (WDSD) 2021

WDSD is a global awareness day recognised since 2012 by the UN, which takes place on 21 March every year.

On WDSD people who have Down syndrome, their families, friends and advocates, work to raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people who have Down syndrome play a vital role in lives and communities.

The theme for WDSD 2021 is ‘CONNECT’ – the focus will be about improving connections to ensure that all people who have Down syndrome can CONNECT and participate on an equal basis with others.

The COVID-19 pandemic has forced many of us, individuals and organisations, to adapt the ways that we connect and communicate with each other.

It is important to find new ways of connecting that are accessible to everyone.

Find out how you can get involved here: World Down Syndrome Day | Down Syndrome International (ds-int.org)

Medical vulnerability of individuals with down syndrome to severe COVID-19 – data from the trisomy 21 research society and the UK ISARIC4C survey published by The Lancet

International study finds increased COVID-19 mortality among adults with Down syndrome

Research by the Trisomy 21 Research society (T21RS) found increased COVID-19 mortality among adults with Down Syndrome compared to the general population, supporting the need to prioritize vaccination for those with the genetic disorder.

The results of the study were published this week in The Lancet’s EClinical Medicine.

Please note, we do not yet have the evidence related to children less than 16.

 

NEXT DSMIG meeting Thursday 17th June 2021 to be held jointly with BACD and BSPGHAN at the RCPCH online conference

The next DSMIG meeting will be held as part of the RCPCH online conference which has now been rescheduled for June 2021.

This year there will be a joint meeting with DSMIG, BSPGHAN and BACD with a general theme of gastrointestinal issues in children who have Down Syndrome and also parent perspectives of having a child with disability during COVID. I am sure a lot of information and experiences can be generalised to other children that we manage in our clinical practice.

The date of the meeting is Thursday 17th June 2021 15:30-18.00 and details for registration will be on the college website.

DSMIG are welcoming abstracts for poster or oral presentation and I would be grateful if you or your colleagues (including multidisciplinary team members) would consider submitting these. Please do share this flyer within your local networks.

Abstracts submission deadline is 4 weeks away on 10th March!  Further info on abstract submissions below:

https://www.rcpch.ac.uk/news-events/rcpch-conference

COMING SOON – New RCPCH Digital Growth Chart Project to include Down syndrome Growth Charts

The Royal College of Paediatrics and Child Health has developed an API ( Application Programme Interface). This is a national , web-based tool that will allow those wishing to use online growth charts, including the developers of electronic patient records to build accurate, validated  growth charts , with associated calculations into their applications.

DSMIG is working with the RCPCH to include the UK Down Syndrome Growth Charts in this product .

The Digital Growth Charts will launch in early 2021, and we will provide updates  about the  Down syndrome charts as they become available.

In the mean time more general information about the RCPCH Digital Growth Chart for potential users and developers can be found using the links below.

Presentation ” Digital Child Growth Assessment- from print to digital “

Demonstration site https://growth.rcpch.ac.uk/

Open forum including information for developers https://openhealthhub.org/c/rcpch-digital-growth-charts/47

Any enquiries – growth.digital@rcpch.ac.uk

 

 

 

 

New Covid-19 Information – vaccine and UK variant

Covid-19 Update – New UK Variant and Vaccines

There is no current evidence that the new UK variant of COVID-19 strain is worse than the previous COVID-19 strain, in terms of severity of illness or risk of death. However, it does spread much more easily, and therefore it is really important to take strict precautions to prevent the spread of the virus. This includes maintaining strict hand hygiene, social distancing and wearing a mask.

As adults with Down syndrome are included in the list of people classed as clinically extremely vulnerable, they should be offered Covid 19 vaccine as part of that group. There is no evidence to suggest that the vaccine poses any additional concerns for people with Down syndrome compared with the general population, and all eligible adults should be offered and encouraged to have the vaccine. For further detail see here

There is very limited evidence of the safety or efficacy of the vaccine in children, and it should not be offered. It may be considered on an individual basis for older children/young people ( Over 12 years) who are extremely vulnerable and at high risk of exposure to infection. See here for further detail.

All information relating to Down syndrome and COVID -19 can be found here. This is being updated to take account of new research findings and updated UK government advice as it becomes available .

28.1.21

NEW Guidelines on thyroid disorder in children and young people with Down syndrome: Surveillance and when to initiate treatment

NEW Guidelines on thyroid disorder in children and young people with Down syndrome: Surveillance and when to initiate treatment now available

Further details also available on Thyroid disorder topic page

The new thyroid guidelines  were officially launched on Friday May 22nd 2020

The event  also introduced the 2020 update of the Parent Held Child Health Record insert.