About the BPSU Study

 

The British Paediatric Surveillance Unit (BPSU) which is part of the Royal College of Paediatrics and Child Health (RCPCH) are using data collected from Paediatricians by the orange card to study PIMS-TS alone or with Kawasaki Disease and Toxic Shock Syndrome, over the pandemic. It was funded by Public Health England (now the UK Health Security agency UKHSA). The first part of their study was published in the Lancet in March 2021. It covered the period March 2020 -June 2020 and quoted 268 cases of PIMS-TS, which included some with features of KD and TSS. This of course will be a conservative estimate, as it does not cover children who were over 16 years, or undiagnosed, or diagnosed but not hospitalised, or that went straight to PICU care (PICANet collect PICU data separately).

Part 2 of the BPSU study, which will almost certainly not cover recent data, was scheduled to have been published already and no reply has been received on our requests for an updated publishing date.

BPSU_Study_part_1

Brief synopsis of study
Around 90% of paediatricians took part in the study
Cases included fell within the RCPCH case definition of PIMS-TS and included children > 16 years
449 cases were reported, but after removing duplicates and those that didn’t fall into the definition or time frame, 343 remained :268 PIMS-TS, 13 with KD only, 2 with TTS and 4 with KD/TSS plus 56 that did not fully fit into any of these criteria.
Ethnicity, age and sex were compared for the 3 conditions
Presenting symptoms and laboratory findings were compared for the 3 conditions
Interestingly, 71.1% had a healthcare or non-healthcare keyworker parent
68.1% of cases were reported as PIMS-TS, with the remaining cases PIMS-TS plus TTS or KD
Cases in London were more likely in black children and the children were slightly older
The median lag time between the COVID and PIMS-TS curve was 16.3 days
Only 44% of admissions included in this study were given a COVID test and this could have led to a misdiagnosis of PIMS-TS, possibly to KD or TSS.
14% of PIMS-TS cases were COVID positive and 63% had COVID antibodies.
A map of all BPSU reports of PIMS-TS cases in England with postcode information (n = 246), alongside the rate of COVID-19 cases in LTLAs in England up to the 1st of July 2020
Confirmed COVID-19 cases by PHECs alongside PIMS-TS cases by week of onset.
Note different y-axes used: left axes for confirmed COVID-19 cases, right axes for PIMS-TS cases.
Temporal analysis of Covid and PIMS-TS cases between March-July 2020, allowing for a median lag of 16.3 days. Notable were reports of cases from the East of England, East Midlands and the South West during periods of low regional COVID-19 prevalence.
OPINION
Those directly involved with the study were given a remit. They also had the interests of children at heart, as the following excerpts make clear. PIMS-TS families would, however, have liked to have been asked to contribute in some way to this study, and for the report to have been sent directly to us when published. We are the faces behind this report and have a wealth of experience that could have added to the depth and breadth of the only study of this type in the UK. We also call upon the RCPCH to follow up on the BPSU recommendations quoted below and to our questions.

BPSU quotes and recommendations

“We want to find out how common this condition is across the UK and Ireland”

“We also hope that this surveillance will raise awareness of the condition amongst paediatricians”

“The BPSU will provide useful information about the condition for doctors looking after children with such conditions, public health specialists and researchers who would like to better understand the condition and develop effective treatments.”

“It is likely that these (cases that did not meet the case definition) were milder cases along the PIMS-TS spectrum, which needs to be taken into account in future case definitions”

“Mild cases and those that were not hospitalised or had short hospital stays, may therefore be missed”

“The strong association between SARS-CoV-2 and PIMS-TS emphasises the importance of maintaining low community infection rates to reduce the risk of PIMS-TS. Understanding the relationship between SARS-CoV-2 and PIMS-TS could provide useful insight into the pathogenesis of both KD and TSS. Close follow up will be important to monitor rapidly changing epidemiology as well as the short to long term complications in children with PIMS-TS.

(Source BPSU Study)

 

Our questions arising from the study

  • You mention the possibility of cases of incomplete or atypical PIMS-TS and the need for the definition of PIMS-TS to be widened. How will this be disseminated and acted upon following your study findings?
  • What is being done to ensure the follow up of known PIMS-TS cases that you recommend in your study?
  • You mention the challenges of collecting data on PIMS-TS, KD and TSS. What action needs to be taken and by who to remedy this?
  • You mention the importance of minimising transmission of COVID-19 in children to reduce cases of PIMS-TS. What action needs to be taken and by who to achieve this this?
  • Has incidence of PCR and antibody testing been improved, as a result of the study?
  • When will a much- needed active surveillance system be set up for PIMS-TS, KD and TSS, so that the public can have access to up to date real time data so that researchers can easily access data to further investigate the links between these 3 conditions and potentially Long COVID too?
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