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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. For more detailed information, please refer to the full guideline.

View this summary online at guidelines.co.uk/455325.article

Communicating with patients and minimising risk

  • 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
  • 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
  • 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
  • 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 
  • 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
  • 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

Managing the underlying condition—patients not known to have COVID-19

  • 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
  • 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
  • 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
  • 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
  • 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
  • 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

Managing the underlying condition—patients known or suspected to have COVID-19

  • 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
  • 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
  • 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
  • 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
  • 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 healthcare settings
  • 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


© NICE 2020. COVID-19 rapid guideline: children and young people who are immunocompromised.  Available from: nice.org.uk/ng174. All rights reserved. Subject to Notice of rights.

NICE guidance is prepared for the National Health Service in England. All NICE guidance is subject to regular review and may be updated or withdrawn. NICE accepts no responsibility for the use of its content in this product/publication.

Published date: 01 May 2020.

Last updated: 14 August 2020.