Discussion
We have demonstrated that the first phase of the COVID-19 pandemic was not associated with route of presentation, TDI or disease severity at presentation for children with a new diagnosis of CC or T1DM at the study centres. Given the reported reduction in paediatric ED attendance,17 18 it had been predicted that both the PI and TDI would be prolonged and clinical presentations would be more severe. This prediction was not supported by our study.
A snapshot survey was commissioned in April 2020 by the Child Cancer Smart Team in conjunction with the Childhood Cancer and Leukaemia Group (CCLG) to obtain the absolute numbers of new diagnoses of CC at each principal treatment centre in the UK (online supplemental file 3). This survey revealed 27% fewer new cases in April 2020 compared with April 2019, raising concerns about the potential for diagnostic delay. Similar anxieties had been expressed related to delayed presentation of patients with T1DM.19 One survey of diabetes units in the UK reported that 20% of children and young people diagnosed with T1DM between 1 March and 30 June 2020 had had a delayed presentation. Reasons for this included fear of contracting SARS-CoV-2 as well as limited access to GP services.15
Similarities between type 1 diabetes and childhood cancer presentations
While T1DM and CC cancer are different in terms of their presentations, we chose to investigate them together because they are both relatively rare, yet well recognised and potentially life-threatening conditions. We found no evidence that either of these conditions were associated with delayed presentations associated with the pandemic. Other similarities include a higher PI during January–March 2020 and a shift from presentation via the general practitioner to the emergency department.
We demonstrated higher PI during January–March 2020 for patients with CC and T1DM. This may reflect a period of uncertainty for patients and healthcare systems in preparation for the first phase of the pandemic. There was widespread UK media coverage of the approaching pandemic and we hypothesise that this may have resulted in families initially avoiding healthcare services. Further work will be required to establish whether this hypothesis can be substantiated with evidence from the behaviour and beliefs of service users themselves. The subsequent reduction in PI during and after lockdown suggests no significant delay in caregivers seeking medical attention for children, which may reflect increased public health messaging that was not initially present during the lead up to lockdown and the pandemic.
While there was variability between units, there was evidence of a shift towards first presentations to ED from primary care, for patients with CC and T1DM. While we did not identify statistically significant changes, we recommend that each treatment centre evaluate any change in how their services have been accessed during the pandemic, to assist in future service planning.
Type 1 diabetes
A study of the North-West London Paediatric Diabetes Network between 23 March and 4 June 2020 reported an apparent increase in cases of new-onset T1DM in two of the five units.15 Overall, 21/30 children with a new diagnosis presented with DKA, 52% of which were severe. These are generally considered to represent high rates of both of DKA and severe DKA in newly diagnosed patients. However, the number of children involved in this study was small, no comparisons were possible with other time periods and we were unable to replicate the findings.
In a large survey of 53 Italian paediatric diabetes centres, the number of newly diagnosed children with T1DM and DKA were similar to 2019.14 However, the proportion of all patients with T1DM who developed severe DKA was significantly greater in 2020 (44.3% vs 36.1%, p=0.03).14 Despite not being significant, the pattern of our results are similar to the Italian experience14 which demonstrated a 9% reduction in new diagnoses of T1DM when comparing January–July 2020 to January–July 2019. Our data showed a 7%–44% reduction in 3 of the 4 months following lockdown in new cases of T1DM, with a 27% decrease during March 2020 when national lockdown was announced. The incidence of DKA at presentation was stable between the measured time periods, however the incidence of severe DKA was slightly worse following lockdown (22% (April–July 2020) vs 12% (January–March 2020) vs 13% (January–July 2019)).
The increased incidence of severe DKA among patients diagnosed post lockdown, while not significant, is a concern. This finding is consistent with the Italian data and with other units in the UK.14 19 It initially appears to be counterintuitive when one takes into account the reduction in the TDI and PI post lockdown. However, it is well recognised that some children with T1DM can present acutely with rapid onset of ketoacidosis. The increased rate of severe DKA at presentation serves to emphasise the importance of the ongoing provision of public health campaigns to raise awareness of the symptoms of T1DM among parents/caregivers.20
Childhood cancer
Overall, TDI for CCs was stable between the three time periods. Consistent with previously published evidence,13 the TDI for leukaemia was shorter than for CNS tumours, suggesting that the COVID-19 pandemic did not disturb this pattern.
A large cross-sectional survey from the Paediatric Oncology East and Mediterranean Group reported that some centres noticed that all newly diagnosed patients experienced delays in diagnosis during the pandemic.21 This was thought to be due to: (1) patients refusing to present for essential visits for fear of contracting COVID-19; (2) hospital staff being relocated to other areas and (3) governmental decisions affecting the availability of public transport and freedom of travel. Although in the UK during the first lockdown the availability of public transport was decreased and in some tertiary oncology centres paediatric hospital staff were redeployed, our data does not support a similar situation in the participating centres.
Overall, 10% of new CC diagnoses in this study required intensive care within 7 days of admission, the majority of these had CNS tumours, most likely due to the requirement for early neurosurgery. From this we infer that patients diagnosed during the pandemic were not more unwell than if they had been diagnosed earlier. We recognise that intensive care admission resulting from treatment can occur in the early stages post diagnosis.22 Consequently, using intensive care admission may overestimate initial disease severity. Reassuringly, a CCLG Study reported that children with cancer and SARS-CoV-2 infection do not appear at increased risk of severe infection compared with the general paediatric population.23
Study limitations
Only four UK centres were involved, therefore the study lacked the ability to detect national variations in patterns of presentation. Given the retrospective nature of our study, we cannot exclude the possibility of incomplete areas of data collection, since that some of the children in the service evaluation will have been treated in more than one centre. We believe that this effect is both random and minimal across the centres. Our data collection approaches used a standardised electronic form replicated across all centres. Data were entered by individuals at each centre and double checked by the same individual at the point of entry to the database. Data were subsequently assessed and cleaned by the database administrator and any discrepancies or queries were sent back to the individual who had collected the data for resolution. With more resource we would have used double data entry techniques and the fact that we were unable to do this represents a limitation of our study.
Given the resources available for this service evaluation, we elected to collect comparison data for 1 year prior to the pandemic (2019). However, we recognise that fluctuation occurs and a longer period of prepandemic data collection would have provided greater insight into this variation. It was reassuring however that the incident cases of CC across the UK as a whole remained stable from 2013 to 2017.24
In view of the fluid situation of the pandemic, data collection was completed in July 2020 as we believed that timely presentation could inform local practice. We will continue data collection to account for the diagnostic lag for specific diseases including brain tumours. Data collection at a more comprehensive national level would also provide greater clarity on diagnostic intervals. Furthermore, it is important to establish whether subsequent public health measures are associated with longer time to diagnosis due to an evolving backlog of patient referrals across the UK.