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COVID-19: exploring the impact of the pandemic on the diagnosis, treatment and outcomes of children with brain tumours

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Sadly, hundreds of children will have received the devastating news they have a brain tumour since the start of the COVID-19 pandemic. Disruptions to health services over this challenging period may have led to delays in their assessments and treatment. Dr Ibrahim Jalloh at Addenbrooke’s Hospital in Cambridge and Professor Rachel Isba of Lancaster University are exploring the impact of the pandemic on the diagnosis, treatment, outcomes and experiences of children with brain tumours and their families. The results will help to inform guidance for the effective management of cancer and other specialist health services during future periods of service disruption.

How are children’s lives affected now?

Around 500 children and young people under the age of 16 are diagnosed with a brain tumour every year in the UK.1 And sadly, these cancers are the most common cause of cancer death in children.

“Finding out that your child has a brain tumour is potentially devastating,” says Dr Jalloh. “And it’s also possible that disruption to health services during the COVID-19 pandemic has made this distressing time even more challenging for children and their families.”

Unfortunately, there is growing evidence to suggest that some of those accessing health services during the first wave of the pandemic may have done so later than usual – potentially delaying important assessment and treatment.

“A delay in diagnosis could make treatment more complex and reduce the likelihood of successful outcomes for a child with a brain tumour,” says Dr Jalloh. “We need to explore what has happened to those children and their families who received their diagnosis during the pandemic.”

How could this research help?

“We want to understand the impact of the pandemic on the diagnosis, treatment, outcomes and experiences of children and young people with brain tumours, and their families,” says Professor Isba.

The researchers will analyse anonymised data from children aged under 16 who were diagnosed with a brain tumour during the first year of the COVID-19 pandemic at all 19 UK specialist centres. They will then compare these results with information from children who were diagnosed during the previous five years.

“We will explore whether service disruption during the pandemic affected how long it took to receive a diagnosis and start treatment – and on children’s outcomes,” says Dr Jalloh.

The team will also interview up to 30 children and their carers about their experiences. Importantly, the participants will help design this part of the study, making sure that their voices are heard.

Our findings should lead to recommendations for managing cancer and other specialist healthcare services during future periods of service disruption. Some changes arising during the pandemic, such as remote consultations, are likely to continue – and this is an opportunity to find out how patients feel about them.

Professor Isba
  1. Cancer Research UK, Brain, other CNS and other intracranial tumours incidence statistics: https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/brain-other-cns-and-intracranial-tumours/incidence#heading-One  [website accessed 11th February 2021]
Project Leader Dr Ibrahim Jalloh, BA MBBS MA PhD FRCS
Location Department of Neurosurgery, Addenbrooke’s Hospital, Cambridge University Hospitals NHS Foundation Trust
Project Team Professor Rachel E Isba, BA BM BCh MA MPH PhD FFPH
Dr G Amos A Burke, MA MBChB PhD FRCPCH FRCP
Dr Donald C Macarthur, BSc MBChB DM FRCS
Dr Amanda Stranks, BSc DPhil MPhil
Dr Elizabeth Brewster, PhD SFHEA
Other Locations Lancaster Medical School, Faculty of Health and Medicine, Lancaster University
Department of Paediatric Haematology and Oncology, Addenbrooke’s Hospital, Cambridge University Hospitals NHS Foundation Trust
Children’s Brain Tumour Research Centre, University of Nottingham
NIHR Cambridge Biomedical Research Centre, University of Cambridge
Grant Amount £142,964
Start Date TBC
End Date TBC
Grant Code (GN number) GN2904