Abstract
BACKGROUND
Since the COVID-19 pandemic, thousands of medical procedures and appointments have been cancelled or delayed. The long-term effects of these drastic measures directly on brain tumour patients and their caregivers are unknown. The purpose of this study is to better understand how COVID-19 has affected this vulnerable population on a global scale.
METHODS
An online 79-question survey was developed by the IBTA, in conjunction with the SNO COVID-19 Task Force. The survey was sent to over 120 brain tumour charities and not-for-profits worldwide and disseminated to brain tumour patients and caregivers. All responses were subdivided by patient vs caregiver and by geographical region.
RESULTS
In total, 1989 participants completed the survey from 33 countries, including 1459 patients and 530 caregivers. There were no significant differences in COVID-19 testing rates (p = 0.662) or the number of positive cases for brain tumour patients between regions (p = 0.1068). Caregivers were significantly more anxious than patients (p = < 0.0001). Patients from the Americas were most likely to have lost their jobs due to the pandemic, practiced self-isolation, and received telehealth services (p = < 0.0001). Patients from Europe experienced the most treatment delays (p = 0.0031). Healthcare providers were ranked as the most trusted source of information.
CONCLUSIONS
As a result of COVID-19, brain tumour patients and caregivers have experienced significant stress and anxiety. Healthcare professionals, brain tumour charities, and not-for-profits must ensure that they continue to provide accessible, high-quality care, information, and support in the age of COVID-19.