Article Text

Opinion
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
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  1. Andrew Robert Barclay1,
  2. Christina McGuckin1,
  3. Susan Hill2,
  4. Sue Protheroe3,
  5. Akshay Batra4,5
  1. 1PGHN, Royal Hospital for Children, Glasgow, UK
  2. 2Great Ormond Street Hospital for Children, London, UK
  3. 3Birmingham Children's Hospital, Birmingham, UK
  4. 4Paediatrics, University Hospital Southampton NHS Foundation Trust, Southampton, UK
  5. 5University Hospital Southampton NHS Trust, Southampton, UK
  1. Correspondence to Dr Andrew Robert Barclay, PGHN, Royal Hospital for Children, Glasgow G51 4TF, UK; andrew.barclay{at}ggc.scot.nhs.uk

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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:

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

  2. The effects of ‘shielding’ on young people.

  3. 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

The following principles should inform each discussion:

  1. 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).

  2. 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.

  3. 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).

  4. 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.

Table 2

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

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:

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

  2. 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).

  3. 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.

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

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

Key messages

  • 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.

Acknowledgments

The authors acknowledge the comments of the corresponding members of the BIFWG in formulating the framework.

References

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Supplementary materials

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Footnotes

  • Contributors ARB was involved in the conception of this paper, he reviewed the literature and primarily wrote the paper, he was involved in writing the vignettes and subsequent re-drafts. CM consulted families who contributed to the patient information and primarily wrote the family letters, she contributed to redrafting of the paper. SH was involved in the conception of this paper, involved in literature retrieval, contributed to redrafting of the paper, and strategy for table 2, she summarised and reduced much of the content. SP was involved in the conception of this paper. She contributed to redrafting of the paper, the agreed strategy for table 2 and primarily wrote vignettes. AB was involved in the conception of this paper, he surveyed the BIFWG for COVID cases and contributed to redrafting of the paper, including the overarching strategy for table 2.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests ARB has spoken at educational events for Takeda and Nutricia. SP has received research funding and consulting fees for Shire/Takeda. SH has spoken at educational events for Baxter and Shire/Takeda and has received consultancy fees from Shire/Takeda. AB has spoken at education events for Takeda and Calea.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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