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.
Authors from the IBTA, the University of Toronto’s Division of Neurosurgery and McMaster University published the survey’s findings in Neuro-Oncology Advances in August 2020.
The IBTA then approached HPP to co-author and produce a lay summary of the findings. This was published during Brain Tumour Awareness Week in October 2020.
Authors:
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.
The Health Policy Partnership undertook this project pro bono for the International Brain Tumour Alliance, and as such received no funding for this work.