Overview

The purpose of this guideline is to maximise the safety of children and young people who are immunocompromised during the COVID-19 pandemic. It also aims to protect staff from infection and enable services to make the best use of NHS resources.

On 14 August 2020, we updated the recommendation on safeguarding to remove a link to government guidance that has been withdrawn.

The guideline covers children and young people (aged 17 and under). It may also be relevant for newborn babies under 72 hours, and 18 to 24 year olds using healthcare services.

Children and young people who are immunocompromised include those with:

• primary immunodeficiencies
• secondary or acquired immunodeficiencies because of their condition
• secondary or acquired immunodeficiencies because of immunosuppressive treatment
• chronic disease associated with immune dysfunction (such as organ dysfunction or failure or severe inflammatory disease).

This guideline focuses on what you need to stop or start doing during the pandemic. Follow the usual professional guidelines, standards and laws (including those on equalities, safeguarding, communication and mental capacity), as described in making decisions using NICE guidelines.

This guideline is for:

• health and care practitioners
• health and care staff involved in planning and delivering services
• commissioners.

The recommendations bring together:

• existing national and international guidance and policies
• advice from specialists working in the NHS from across the UK. These include people with expertise and experience of treating children and young people who are immunocompromised during the current COVID-19 pandemic.

NICE has also produced COVID-19 rapid guidelines for children, young people and adults on:

• severe asthma, rheumatological autoimmune, inflammatory and metabolic bone disorders
• dermatological conditions treated with drugs affecting the immune response
• gastrointestinal and liver conditions treated with drugs affecting the immune response
• arranging planned care in hospitals and diagnostic services.

We developed this guideline using the interim process and methods for developing rapid guidelines on COVID-19 in response to the rapidly evolving situation. We will review and update the recommendations as the knowledge base develops using the interim process and methods for guidelines developed in response to health and social care emergencies.

1. Communicating with patients and minimising risk

1.1.

Communicate with patients and their parents or carers, and support their mental wellbeing to help alleviate any anxiety and fear they may have about COVID-19. Signpost to charities, support groups (including NHS Volunteer Responders), UK government guidance on supporting children and young people’s mental health and wellbeing and Royal College of Paediatrics and Child Health resources for parents and carers.

1.2.

Reassure patients and their parents or carers that COVID-19 usually causes a mild, self-limiting illness in children and young people, even in those who are immunocompromised.

1.3.

Advise patients and their parents or carers not to avoid their usual appointments unless told to, because it could cause harm to the patient. Tell them about alternative approaches that can be taken to minimise risk.

1.4.

Tell patients and their parents or carers to contact their specialist team straight away if they think that the patient may have COVID-19 or if they have other medical concerns, to ensure any symptoms, underlying conditions and immunosuppressant medicines are appropriately assessed. If they are unable to contact the team they should contact the NHS 111 online coronavirus service or call NHS 111 and advise about their long-term condition. In an emergency they should first call 999 if the patient is seriously ill. [amended 21 May 2020]

1.5.

Safely reduce usual face-to-face contact with alternative approaches, including:

• using telephone, video or email consultations whenever possible
• contacting people via text message, telephone or email
• using electronic prescriptions rather than paper
• using different methods to deliver prescriptions and medicines, for example, pharmacy deliveries, postal services, NHS Volunteer Responders or introducing drive-through pick-up points for medicines.

1.6.

Advise patients and their parents or carers to keep a list of the medicines they take and the conditions they have, as well as a copy of a recent clinic letter, to give to healthcare staff if they need treatment for COVID-19.

2. Managing the underlying condition – patients not known to have COVID-19

2.1.

If patients need to have face-to-face appointments:

• ask them to attend with only 1 parent or carer to reduce the risk of contracting or spreading COVID-19
• advise parents not to bring their other children if possible
• ask them to avoid using public transport if possible
• advise them, their parent or carer to tell the team about any symptoms of COVID-19 before the appointment. If needed, triage the patient’s care as appropriate (cancel or rearrange the appointment, or ask them to attend and treat as suspected COVID-19).
• think about alternative face-to-face approaches, such as carrying out home visits if resources allow and follow UK government guidance for infection prevention and control.

2.2.

Minimise time in the waiting area by:

• careful scheduling
• encouraging patients not to arrive early
• texting or phoning patients when you are ready to see them, so that they can wait outside, for example, in their car
• providing a ‘clean route’ through the healthcare setting
• delivering treatment promptly (such as having phlebotomy services or immunisations ready)
• dispensing prescriptions rapidly.

2.3.

Tell patients and their parents or carers to continue with their usual treatment and monitoring plans at home and remind them of usual safety-netting advice for their condition.

2.4.

When deciding whether to start medicines that affect the immune system, discuss the risks and benefits with the patient and their parents or carers. Take into account the following in the context of COVID-19:

• Is it safe to delay treatment?
• If treatment is not needed immediately, undertake watchful waiting.
• If treatment is needed, is there an alternative with a lower overall risk for the patient?
• Is the required monitoring and review feasible?
• Can monitoring be done remotely or at a frequency that minimises the risk to the patient’s safety and wellbeing?
• Is there a route of administration that could make hospital attendance or admission less likely?

2.5.

For patients who are already taking medicines that affect the immune response, continue treatment to minimise the risk of graft rejection, a relapse or flare-up. Discuss the risks and benefits with the patient and their parents or carers. Reduce the risk to the patient’s safety and wellbeing and minimise face-to-face contact, by reviewing:

• dosage
• mode of delivery
• route of administration that could make hospital attendance or admission less likely (such as using community outreach teams if available)
• frequency of monitoring
• whether monitoring can be done remotely.

2.6.

Assess whether it is safe to increase the time interval between blood tests for drug monitoring if patients are stable on treatment. Take into account the patient’s age and any comorbidities.

3. Managing the underlying condition – patients known or suspected to have COVID-19

3.1.

Be aware that:

• children and young people often show no or mild symptoms of COVID-19 and very few will develop severe or life-threatening disease, but those who are immunocompromised may be more vulnerable to COVID-19
• COVID-19 can be difficult to diagnose and the symptoms can overlap with symptoms of other diseases
• patients taking medicines that affect the immune response might have atypical presentations of COVID-19; for example, those taking prednisolone may not develop a fever
• COVID-19 affects children and young people differently to adults so there may be less risk in starting or continuing with medicines that affect the immune system.

3.2.

If a patient has any red flag signs or symptoms of a possible serious illness (for example, sepsis, meningitis or febrile neutropenia), assess and treat them in line with usual care for these infections.

3.3.

If a patient does not have any red flag signs or symptoms suggesting an alternative diagnosis, follow UK government guidance on investigation and initial clinical management of possible cases. This includes information on testing and isolating patients.

3.4.

When patients with symptoms of COVID-19 have been identified, follow appropriate UK government guidance on infection prevention and control. This includes recommendations on using personal protective equipment (PPE), patient transfers, and options for outpatient settings.

3.5.

If COVID-19 is later diagnosed in a patient not isolated from admission or presentation, follow UK government guidance on management of exposed healthcare workers and patients in hospital settings.

3.6.

If thinking about whether to stop usual treatment when a patient has symptoms of COVID-19, contact the specialist team for urgent advice before stopping any medicines. Discuss the risks and benefits with the patient and their parents or carers, and take into account:

• the severity of the underlying condition
• the risks and benefits of stopping or continuing treatment
• the effect of stopping treatment on other conditions
• whether COVID-19 is confirmed
• the severity of the COVID-19 symptoms
• other risk factors such as age and comorbidities, for example, diabetes or severe respiratory, cardiac or inflammatory disease.

4. Modifications to usual care

4.1.

Consider modifying usual care to reduce patient exposure to COVID-19 and make best use of resources (workforce, facilities, anaesthetics, equipment and medicines) if it is safe to do so.

4.2.

When modifying individual patients’ treatment plans:

• take their clinical circumstances and preferences into account
• involve all relevant members of the multidisciplinary team in the decision
• record the reasoning behind each decision.

5. Healthcare workers

5.1.

All healthcare workers involved in receiving, assessing and caring for patients who have known or suspected COVID-19 should follow UK government guidance for infection prevention and control. This contains information on using personal protective equipment (PPE), including visual and quick guides for putting on and taking off PPE.

5.2.

Healthcare workers with known or suspected COVID-19 should self-isolate and not return to working directly with patients who are immunocompromised until they:

• show no signs of fever for 1 week and
• test negative for COVID-19.

Healthcare workers can return to work in other clinical areas after self-isolating in line with UK government guidance for households with possible COVID-19 infection. [amended 31 July 2020]

5.3.

If a member of staff needs to self-isolate, ensure that they can continue to help if they are able to by:

• enabling telephone or video consultations and virtual attendance at multidisciplinary team meetings
• identifying patients who are suitable for remote monitoring and follow- up, and those who are vulnerable and need support
• carrying out tasks that can be done remotely, such as entering data.

5.4.

Support staff to keep in touch as much as possible, to support their mental wellbeing.

5.5.

Provide all staff with visible leadership and supportive messaging, to maintain morale.

5.6.

Take account of the information on the NHS Employers website about good partnership working and issues to consider when developing local plans to combat COVID-19.

Update information

14 August 2020: We removed the link to government guidance on supporting vulnerable children and young people from recommendation 1.9 because the guidance has been withdrawn.

31 July 2020: We amended recommendation 5.2 to clarify that healthcare workers should selfisolate until they show no signs of fever for 1 week.

21 May 2020: We added immunosuppressant medicines to recommendation 1.4 because these should be reviewed if a child or young person may have COVID-19 or there are medical concerns. We aligned recommendation 1.7 with UK government guidance for young people on shielding and protecting people most likely to become unwell if they catch coronavirus.

Your responsibility: The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.

Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.

Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.