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. For people with a life-threatening condition such as 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 essential 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.