Review of a paediatric inflammatory bowel disease service during the pandemic and the impact of the CNS role

Inflammatory bowel disease (IBD) is an umbrella term covering two main conditions, Crohn's disease and ulcerative colitis (Levine et al, 2014). The aetiology of IBD is as yet unknown, but genetics, environment, gut microbiome and the individual's immune system are thought to have a role in its development (Zhang and Li, 2014). IBD can affect both children and adults and commonly presents with gastrointestinal (GI) manifestations such as diarrhoea, urgency to pass stools, blood and mucous in the stools, abdominal pain and fatigue. There are also extra-intestinal manifestations that can affect organs outside the GI tract such as skin, joints and eyes (Vavricka et al, 2015). IBD is characterised by relapsing and remitting symptoms that can lead to periods of unexpected symptom exacerbation. Although there is no cure, many patients with IBD are on long-term medications to help control the inflammation and, therefore, their symptoms. Many medications used to treat IBD can modulate the immune system and most children take more than one medicine to achieve and maintain clinical remission (Rosen et al, 2015).

IBD clinical nurse specialists (CNSs) play an important role in the care of children and their families. They are often a familiar face for the patient throughout their journey in paediatrics. CNSs will meet children at initial diagnosis and will co-ordinate their transition through to eventual adult care. CNSs provide advice, support and treatment counselling, monitor investigation results, communicate concerns to the wider team and review patients both face-to-face and via telephone/email (Molander et al, 2018).

Since the beginning of 2020, COVID-19, caused by the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), has spread worldwide, leading the World Health Organization to announce a pandemic in March 2020. It has caused a public health emergency and a subsequent need for changes to healthcare provision (Cucinotta and Vanelli, 2020).

In March 2020, the UK Government and many countries worldwide introduced a lockdown, limiting people to only essential activities and travel. With NHS resources and staff being diverted to deal with the pandemic, the management of chronic conditions such as IBD has been severely affected. In this project, the authors aimed to review the impact of COVID-19 on the paediatric IBD service at one hospital, with particular focus on the changes brought to the workload of the IBD CNS team.

Method

The authors undertook a retrospective review of clinical records and the IBD database from January 2019 to September 2020 at the Evelina London Children's Hospital, a tertiary paediatric gastroenterology centre. Patients were identified from the IBD database. Data from January 2019 to the end of February 2020 (before the UK lockdown) were compared to data from March to September 2020 (during the first UK lockdown and its aftermath). The number of clinics, each patient's demographic profile and clinical data were recorded in IBM SPSS version 25.

Before the pandemic, the gastroenterology service had two full-time CNSs, one IBD CNS and one general gastroenterology CNS. The IBD CNS ran 20 telephone clinic slots and 10 face-to-face clinic slots per month. The consultant-run IBD clinic had 20 face-to-face slots per month.

During the lockdown period, the CNS maintained 20 telephone slots, but had no regular face-to-face capacity. One CNS and all junior doctors were redeployed during the pandemic, with three consultants covering two junior doctors' activities. The day care unit was used for essential face-to-face patient contact.

The project was registered with the hospital clinical governance team as a review of practice and ethical approval was not required.

Results

At the beginning of October 2020, when the authors began this review, 116 paediatric IBD patients were identified, 68 (59%) male and 48 (41%) female, with an age range of 1 to 18 years. Sixty-four (55%) had Crohn's disease, 47 (40%) had ulcerative colitis, 2 (2%) had unclassified IBD and 3 (3%) had very early onset IBD. Of these 116 patients, 34 were diagnosed/transferred to the IBD service in the period January 2019 to end of February 2020 (an average of 2.4 per month), 24 were diagnosed/transferred from March 2020 to the end of September 2020 (an average of 3.4 per month). As shown in Table 1, there was a significant increase in virtual CNS contacts during the period March 2020 onwards, as compared to January 2019 to February 2020. This likely reflects the decrease in consultant face-to-face activity. Statistics are somewhat limited due to the relatively small size of the patient cohort available.

There was a similar increase in the number of children discussed in the virtual IBD clinic (virtual multidisciplinary team (MDT) clinic), and an increase in the number of children requiring treatment at home (calculated by the number of homecare prescriptions issued) and also an increase in the number of children diagnosed with IBD and/or transferred to the authors' service for their care during the pandemic, as detailed in Table 1.

Discussion

During the COVID-19 pandemic, roles had to be adapted as members of the team, including one of the two CNSs, were redeployed to other areas of the hospital. This situation was similar across the UK (Kennedy et al, 2020a). Of the centres that took part in Kennedy et al's study, 63% felt that it was either highly likely or certain that their teams would drop below the required number of CNSs to provide effective IBD care, citing the most likely reason for this as CNS redeployment to cover more pressing clinical duties.

Table 1 shows ad hoc contacts with the IBD advice line in number of patients, rather than number of individual contacts. It does not include patients who were already booked into a formal telephone, video or face-to-face clinic slot. The main reason for increased contacts was parental anxiety regarding their child's vulnerability to COVID-19. This was made harder to manage by the fact that it came at a time where the workforce was reduced by redeployment.

In March 2020, advice was published by the UK Government recommending that clinically vulnerable individuals should ‘shield’, limiting their interaction with others and leaving the home only in essential circumstances, such as for necessary hospital visits (Kennedy et al, 2020b). The concept of shielding was a cause for concern for many of the patients within the IBD cohort. Despite a generic government-issued letter advising shielding, which was received by all the IBD patient cohort in the authors' service, the British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) IBD Working Group advice (2020) provided reassurance that most of these patients fell into only the low- or moderate-risk groups. Many patients who were not in the high-risk category decided to shield anyway and felt concerned about any guidance that did not align with this. The prospect of children returning to school also caused a great deal of anxiety for families. The CNS spent a lot of time encouraging students' safe return, when hygiene and distancing measures were in place. Direct communication with individual schools was also undertaken when required. Many families remained understandably concerned about what hygiene and distancing measures were actually feasible and whether they would be reliable. These two worries accounted for a sizeable proportion of the advice line contacts during this time.

In order to minimise unnecessary patient flow through the hospital, most face-to-face appointments were cancelled. Telephone and video have become widely used for routine review. As shown in Table 1, contact with the CNS team, both planned and via the advice line, increased during lockdown. In part, this is likely to have been a result of decreased consultant availability due to medical team redeployment, with the CNS doing the utmost to continue to provide crucial services to patients. This was made especially challenging during periods where there was only one CNS in the team, who had to prioritise workload based on clinical urgency.

Although telephone and video clinics have been more successful than anticipated and have been welcomed by patients (Dobrusin et al, 2020), the difficulty of building relationships with newly diagnosed patients and their families when using virtual methods has also been apparent. The day care unit was accessed by patients where face-to-face contact was deemed crucial, but could be used only in these specific cases. At the time of writing, face-to-face outpatient appointments are now once again available in small numbers, for new diagnosis discussions, or for those patients who require urgent examination or investigations.

Although it was noted that referral of potential IBD patients from GP surgeries and local hospitals has been interrupted during lockdown, particularly in adults but also in children (Ashton et al, 2020), the authors' data showed an increase in the number of new paediatric patients with IBD coming to the service. This is likely secondary to new diagnoses and/or children with existing IBD who wished to transfer their care to the authors' service owing to the mixed picture of support provision for children with IBD in the region during the pandemic. The authors' centre was a designated hospital for children's services during this time.

After the first wave, the IBD team, much like many health professionals across the country, had a better idea of what to expect during a pandemic (Wosik et al, 2020). They were prepared in a way that they were unable to be beforehand, and were able to identify priorities heading into a second wave and to anticipate the concerns of patients and their families. Now, due to the work of national bodies, such as the BSPGHAN IBD Working Group, which has provided risk stratification and guidance, CNSs can give clear advice in terms of hygiene, distancing, safety at school and shielding, if another wave occurs. A list of those patients deemed ‘extremely clinically vulnerable’ is now kept updated in a shared location, for ease of team access and will make communications for any future shielding requirements more efficient. This will help to provide a safety net for patients in future, even if the team becomes depleted of key staff again, as detailed in role adaptation in Box 1.

Box 1.Role of the IBD/gastroenterology CNS during the pandemic
Cover the role of the redeployed CNS within the team

This study was limited by the retrospective design and small size of the study cohort as it is a single-centre experience, but the authors believe it highlights the important contribution played by paediatric IBD CNSs during the COVID-19 pandemic.

Conclusion

In this article, the authors shared the experience of a paediatric IBD service during the COVID-19 pandemic and how the team adapted to respond to competing clinical demands. The pressures on the NHS necessitated changes to routine practice and many staff were redeployed to cover urgent clinical needs. The paediatric IBD CNS played a pivotal role in supporting and maintaining high-quality services during this exceptional time.

KEY POINTS

• Staff running a paediatric inflammatory bowel disease service at a tertiary hospital had to reorganise the service during the coronavirus pandemic
• With staff redeployment to other areas, the IBD clinical nurse specialist ran more virtual clinics and provided more email and telephone advice
• Providing information and reassurance to children and parents was a major part of the remaining CNS's role during the pandemic

CPD reflective questions

• What changes to your service, as a result of the pandemic, will you retain?
• What has been the most difficult problem to overcome during the pandemic and what would you do differently in future?
• What have been your patients' priorities during the pandemic and how far do you think your service has met these?