Brain tumours and COVID‑19

HPP co-authored a lay summary of findings from the International Brain Tumour Alliance and Society for Neuro-Oncology survey on how COVID-19 has affected brain tumour patients and carers around the world.

Brain tumours and COVID‑19

HPP co-authored a lay summary of findings from the International Brain Tumour Alliance and Society for Neuro-Oncology survey on how COVID-19 has affected brain tumour patients and carers around the world.

Context

The COVID-19 pandemic has forced people across the world to make decisions about how to balance the risk of contracting the virus with meeting other health, social and financial needs – and for people with a life-threatening condition like a brain tumour, this has been particularly challenging.

Some people with brain tumours have been asked to modify their original plan of care in light of the pandemic. Scheduled healthcare visits may have been cancelled, postponed or converted to virtual appointments. In some cases, tests and treatments have also been cancelled, postponed or changed.

The potential impact of this situation is of serious concern to everyone in the brain tumour community. To better understand how patients and carers were feeling about the pandemic, the International Brain Tumour Alliance (IBTA) organised a survey, in collaboration with the Society for Neuro-Oncology’s (SNO) COVID-19 Task Force. This was the first international, multilingual survey asking about the experience of people with brain tumours and their carers during the COVID-19 pandemic.

The survey found that the principal concern among brain tumour patients and carers was the risk of missing out on needed brain tumour care because of the pandemic. It also revealed that many carers experienced an increased care burden as a result of the stresses of the pandemic, particularly social restrictions that left them unable to rely on help from other family members and friends.

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25% of patients who completed the survey had experienced delays, modifications or cancellations in their care due to COVID-19

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Nearly 50% of patients and carers who completed the survey believed their job was at risk because of the pandemic

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68% of patients actively undergoing treatment were unwilling to skip their next treatment despite the potential risk of exposure to COVID-19

What we achieved

Authors from the IBTA, the University of Toronto’s Division of Neurosurgery and McMaster University published the survey’s findings in Neuro-Oncology Advances. The findings were published in August 2020.

The IBTA then approached HPP to co-author and produce a lay summary of the findings. The report was published during Brain Tumour Awareness Week in October 2020.

Key partners and stakeholders

Authors

  • Suzanne Wait, The Health Policy Partnership
  • Mathew R Voisin, Division of Neurosurgery, Department of Surgery, University of Toronto
  • Tess Chee, McMaster University
  • Stuart Farrimond, International Brain Tumour Alliance
  • Kathy Oliver, International Brain Tumour Alliance

 

The report was published by the International Brain Tumour Alliance, The Health Policy Partnership, the Society for Neuro-Oncology and the University of Toronto’s Department of Surgery.