Exit strategies from the COVID-19 lockdown for children and young people receiving home parenteral nutrition (HPN): lessons from the BSPGHAN Intestinal Failure Working Group experience.

Background

In response to the novel COVID-19 pandemic, rapid and unprecedented public infection control measures were undertaken by all four nations of the UK culminating in ‘lockdown’ with the majority of the population being asked to stay at home other than for a few designated essential activities. In addition, identified vulnerable members of the population were required to participate in ‘enhanced social distancing’ or ‘shielding’, remaining strictly housebound, dependent on outside assistance for essential items and isolating from members within their household. This was proposed for 12 weeks in the first instance.1–4

Necessity for shielding was considered on the basis of relative burden of chronic disease and known risk factors for severe COVID-19 infection; however, young age conferred a protective association with infection.5 Although central government described the principles of enhanced distancing measures, the framework for the degree of measures employed and to which distinct patient groups was largely devolved to national expert bodies. As such, multiple national expert bodies considered adults with long-term intestinal failure (IF) with an ongoing need for home parenteral nutrition (HPN), as significantly vulnerable enough to warrant ‘shielding’.6 7

The Royal College of Paediatrics and Child Health (RCPCH), in consultation with multiple paediatric specialty groups, published advice on the principles of ‘shielding’ for children. The advice outlined the unique challenges faced by families and carers delivering socially distanced care to dependent children who have specific conditions, and also the impact of ‘shielding’ on children.8 The RCPCH and the British Society for Paediatric Gastroenterology Hepatology and Nutrition (BSPGHAN) endorsed ‘shielding’ for a number of key chronic gastrointestinal conditions, with a stratified approach in some conditions such as inflammatory bowel disease. The consensus of the BSPGHAN Intestinal Failure Working Group (BIFWG) was that children and young people receiving HPN should participate in shielding.8 The decision was based on the desire to keep key carers well and children safe and out of hospital (given that this population are required to present to hospital with any significant fever). As lockdown exit strategies were described, it was important to consider what social distancing policies patient groups should follow.

The purpose of this document is to:

Describe the developments in our understanding of the COVID-19 in the context of children with chronic health conditions.

The effects of ‘shielding’ on young people.

We then describe our strategy for ending shielding measures for children receiving HPN, and the move to standard social distancing with their age group unless individual considerations modify this approach. This approach may assist other clinicians who have to continue to decide on risk stratification for patients with complex disease.

During the initial lockdown period it was agreed that a new BIFWG stance to shielding for our patient population should be devised on the basis of general advise on children from the RCPCH, published literature, and our clinical experience during the pandemic. We wished to establish what was known about COVID-19 and children with chronic diseases, the effects on lockdown on children and whether any children receiving HPN in the UK had knowingly contracted COVID-19.

What is now known about COVID-19 and children?

While the initial information from China on COVID-19 appeared to suggest a significant protection from severe infection by young age, what was not immediately clear was how dramatic the reduction in risk was for younger people, in terms of asymptomatic carriage, severe clinical course or risk of mortality. The gastrointestinal manifestations of COVID-19 in children are only apparent after respiratory symptoms and are mild and self-limiting and do not contribute significantly to COVID-19 morbidity in children.9–20 Children appear to be the index case in family transmission infrequently.21 Transmission rates of COVID-19 from children were very low in the early pandemic22 and countries that have reopened nurseries and schools have not experienced institution-related outbreaks.23 24 The data for COVID-19 infection in children with chronic gastrointestinal conditions, although limited, are reassuring in terms of relative incidence and severity.25 26 Data from severely immunosuppressed children, even in high-level pandemic areas, are that of low overall infection rate with low level need for hospitalisation.27 Black Asian and minority ethnicity (BAME) does incur greater risk of severe disease and mortality in UK adults28; paediatric data have suggested BAME to be a risk factor in UK children but the relative risk is harder to quantify.29 30 To date, significant morbidity and mortality from COVID-19 in children appears limited to the idiopathic paediatric multisystem inflammatory response, for which pre-existing chronic disease does not appear a major risk factor.31 32

We did not identify any data reporting severe complications of short bowel syndrome, IF or HPN from COVID-19, both in the adult and paediatric literature. Through corresponding members of BIFWG and eBANS, we established that to date none of the 400 patients <16 years receiving HPN in the UK have knowingly contracted COVID-19.

What is now known about children, lockdown and shielding?

The consequences on the mental health of children required to take quarantine measures are well described and include anxiety, distress and increased risk of major mental health disorder.33 The effects are disproportionately isolating on our adolescent patients, for whom friendship groups are already difficult to establish due to chronic disease.34 The effects of prolonged interruption of formal education for a population already at significant risk of poorer social and educational attainment needed to be considered in ongoing risk assessment. There had been a significant reduction in children’s presentation to accident and emergency departments and face-to-face paediatric consultations. Children’s presence in society had declined in general, particularly for those with chronic health conditions. These children as such were ‘vulnerable’ and the risks of this ongoing social invisibility were amplified and needed to be considered when weighing up the potential benefits of social distancing measures.35 36

Leaving lockdown and shielding

The initial period of shielding ended for many vulnerable patients. What happens thereafter is determined by the individual’s health condition, local protocol on social distancing across the four nations and local emergence status. We outline our new strategy for children receiving HPN based on the available evidence and our cumulative experience. The pandemic has proved to be a unique and bewildering time for children and families, and for the clinicians who have to determine what to recommend individual patients from the synthesis of emerging science, population measures and local infection rates. Supporting families moving from shielding to increasing emergence and schooling requires effective test and trace enforcement, rapidly available local infection data, responsive local public health and personalised approach from clinicians and multidisciplinary teams (MDTs) which could involve local knowledge of very small community clusters or individual schools distancing effectiveness. The clinical team must remain agile to help enact and reverse emergence measures rapidly. We know that the risks to children from COVID-19 disease are much lower than in the adult population; however, absolute quantification of risk for our patient group is unknown and will remain obscure.

BIFWG strategy for lockdown emergence, re-enactment of enhanced social distancing and recommencement of schooling

Depending on geographic location in the UK, the social distancing status of the general population may vary from ‘ongoing lockdown’ to primary or secondary phased relaxation of lockdown measures.1–4 These conditions will continue to advance or regress locally depending on local infection rates. Clinicians’ and MDTs’ understanding of local (national) emergence from lockdown framework is essential to inform decision-making (UK variations in phase re-emergence are summarised in table 1). A member of the MDT should regularly conduct a face-to-face or virtual consultation with each family to discuss the family’s current status and potential need for re-enactment of ‘shielding’ or not and strategy for ongoing social re-emergence.

Table 1

Summary of four nations’ approach to exit from lockdown

Nation	England 1	Scotland 2	Wales 3	Northern Ireland 4
Lockdown	Lockdown	Phase 0	Lockdown	Lockdown
Step 1	Workers who cannot work from home now travel to work Unlimited exercise outdoors Non-household meetings one-on-one outdoors Travel to outdoor spaces Vulnerable limit contact outside household Continue ‘shielding’	Unlimited local outdoor exercise Contact with other household outdoors Reopening of workplaces for work that cannot be performed at home Outdoor-limited retail	‘Red’ School remains for key workers and vulnerable Seeing one member out with household for care only Unlimited local outdoor exercise	Schools remain for key workers and vulnerable Workers who cannot work at home travel to work Outdoor non-contact sports activities Groups of 4–6 non-household members can gather outdoor
Step 2	Phased reopening schools Other households contact ‘bubbles’ to be announced Shared childcare in two households	Larger outdoor gatherings Indoor meeting with other one household On-campus laboratory work Playgroups and sport courts reopen Registration offices for high priority	‘Amber’ Schools open for priority groups Exercise with other individual or group, non-contact team sports Travel for leisure and non-essential retail Museums and galleries open Limited cultural events	Schools open to wider definition of key workers Non-food retail resumes Gatherings of up to 10 individuals outdoors Resumption of team sports training
Step 3	Opening of, public worship and self-care retail Museums, galleries, indoor gyms and cinema open thereafter Wider outdoor public gatherings, weddings, sports and cultural yet thereafter	Indoor meeting with multiple households Longer distance travel School reopen for part-time face to face Museums, galleries, indoor gyms and cinema open	‘Green’ All children and students access education Meeting small groups for socialisation outdoors Unrestricted travel All sports and cultural leisures open Pubs, restaurants, non-essential indoor retail open	School open to priority cohorts Phased return to office work Gatherings of up to 30 people Resumption of non-contact sports Museums and galleries open
Step 4		No time frame set Further relaxation of face-to-face gatherings Full opening of childcare, schools and universities Resumption of sport and mass gatherings		Schools open for all pupils part-time Competitive sports resume behind closed doors, leisure centres open Wider range of social gatherings
Step 5				School extended to full time for early years Extended social group gatherings Resumption of contact sports Spectators attend live sports and concerts

The following principles should inform each discussion:

The majority of families can discontinue shielding and transition to the current local social distancing protocols. Only patients who are in the highest risk should have the need for re-enactment of ‘shielding’ when local public health recommends (table 2).

Table 2

BSPGHAN NIFWG framework for considering individualised lockdown exit strategy for children receiving HPN

Group B		Group C
Most vulnerable patients to consider whether they may continue to re-enact shielding when appropriate8 38	No return to ‘shielding’ but consider ‘other enhanced social distancing’	Enact social distancing as per local population measures
Circumstances that may recommend MDTs and families to re-enact shielding when appropriate* Children at risk of severe infection due to immunodeficiency induced by their disease or drug therapy Other significant conditions or other organ involvement (renal, haematology, cardiac, GI, respiratory, diabetes mellitus, severe metabolic disease, children with severe neurological disease, severe lung disease requiring continuous or overnight supplementary home oxygen Decompensated liver disease. Receiving post-transplant immunosuppression or on transplant waiting-list Social cofactors (eg, heavily reliant on support from healthcare professionals/carers)	Circumstances to consider group other enhanced social distancing measures† Any of first column factors not severe enough to merit ‘shielding’ 7/7 PN Under 1 year of age Difficult contingency arrangements for prime carer illness High output ileostomy Parental anxiety BAME ethnicity	Circumstances that would recommend patients to act with general population‡ No immunosuppression <7 nights PN Normal neurodevelopment Easy contingency arrangements for prime carer illness

*No children or young people with chronic gastrointestinal conditions automatically fulfil highest risk 'Group A' by revised RCPCH criteria.8 However a proportion of HPN patients may have severe multiple risk factors that may give consideration to enacting as 'Group A'. These families will represent a small minority of the total PN population and likely most risk factors will emerge from other organ dysfunction. However, it maybe that cardiorespiratory or neurodisability in combination with IF may lead to a decision of ‘continue shielding’ with less severe disease than would indicate shielding in isolation, and discussion with relevant other specialist team may assist with decision-making.

†Potential strategies are the following: (1) Transition to local social distancing protocol with other age group peers; (2) temporal transition to local social distancing protocol, such as 2 weeks behind age group peers; (3) remain a ‘step’ behind age group peers; (4) remain in lockdown but not ‘shielding’.

‡If an MDT considers that the mental health risks to the individual or family OR if the potential safeguarding risks for the child are significantly high enough, they may wish, in conjunction with the families or social services, to make a case for ongoing nursery or school placement even with lockdown resumption. However, we recommend some form of peer review for this extraordinary decision.

BAME, Black Asian and minority ethnicity; BSPGHAN, British Society for Paediatric Gastroenterology Hepatology and Nutrition; GI, gastrointestinal; HPN, home parenteral nutrition; IF, intestinal failure; MDT, multidisciplinary team; NIFWG, Nutrition and Intestinal Failure Working Group; PN, parenteral nutrition.

Some patients may have risk factors additional to IF, but these are insufficient to warrant re-enacting shielding; families and MDTs may wish to agree some enhanced distancing measures above current local protocols (such as remaining a step behind table 2). These measures are primarily in place to help encourage families who may continue to be anxious or reluctant to engage with re-emergence and resuming face-to-face education.

Where there has been local regression of local social distancing measures, the MDT and the family may wish to consider a more cautious approach to such as remaining in lockdown for additional 2 weeks (table 2).

If an MDT considers that the mental health risks to the individual or family OR if potential safeguarding risks for the child are significantly high enough, they may wish, in conjunction with the families or social services to make a case for ongoing nursery or school placement even with lockdown resumption. However, we recommend some form of peer review for this decision.

A summary of potential strategies for emergence from lockdown are summarised in table 2.

Resumption of face-to-face education

The plans for resumption of school education are complex and diverse across the four UK nations at the time of writing. However, again, an initial discussion will aid in making individual decisions on re-engagement with education. As per the RCPCH guidance, the following principles should guide discussions:

Children should only stay away from school if they are considered as part of ‘ongoing shielding’ at times that shielding is to be enacted

The majority of patients should be having a balanced conversation about returning to school.

Many families will be understandably anxious and may wish to take a tailored approach (such as following in 2 weeks behind their peers to assure that initial logistics of social distancing are being followed well, or initially following a reduced timetable).

Where there is reluctance to re-engage with face-to-face education, the MDT may need to consider what impact this may have on a child’s social invisibility and resultant vulnerability.

Siblings of extremely vulnerable children should attend school as per local social distancing protocols.

Where there are positive contacts in school ‘social bubbles’, patients will need to isolate as per whole group.37 38

Children and young people receiving home parenteral nutrition (HPN) were advised to ‘shield’ when lockdown commenced in March 2020.

It is now apparent that gastrointestinal manifestations of COVID-19 in children are mild and self-limiting.

We have not identified any reports of severe complications of COVID-19 in short bowel syndrome, intestinal failure or HPN from COVID-19 in the adult and paediatric medical literature.

Mental health of children required to take quarantine measures is well described with anxiety, distress and increased risk of major mental health disorders.

HPN children should no longer be considered ‘extremely vulnerable’ since negative social and developmental effects would appear to outweigh protection.

Shielding has ended and the majority* of families can transition to the current local social distancing protocols.

If there is resumption of lockdown due to a second virus peak, we propose that the majority* of families only follow social distancing policy and do not resume ‘shielding’ again, even if adult HPN populations do so.

Patients* and families should have a balanced conversation about returning to school. They may wish to take a tailored approach, such as following in 2 weeks behind their peers to assure that initial logistics of social distancing are being followed.

*If a child has coexisting disease, for example, cardiorespiratory, neurodisability, immunodeficiency, inflammatory bowel disease or is on certain immunosuppressive treatment that would not in itself be severe enough to warrant shielding, clinicians may wish, in conjunction with other specialty teams and families consider that the patient should continue to enact shielding when appropriate from cumulative multiorgan risk.