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Brain tumors and COVID-19: the patient and caregiver experience
Mathew R Voisin1, Kathy Oliver2, Stuart Farrimond2
1Division of Neurosurgery, Department of Surgery, University of Toronto, Toronto, Ontario, Canada.
Background:
Since the COVID-19 pandemic began, thousands of medical procedures and appointments have been canceled or delayed. The long-term effects of these drastic measures on brain tumor patients and 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 International Brain Tumour Alliance, in conjunction with the SNO COVID-19 Task Force. The survey was sent to more than 120 brain tumor charities and not-for-profits worldwide and disseminated to pediatric and adult brain tumor patients and caregivers. Responses were collected from April to May 2020 and subdivided by patient versus 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 = .662) or positive cases for brain tumor patients between regions (P = .1068). Caregivers were significantly more anxious than patients (P ≤ .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 ≤ .0001). Patients from Europe experienced the most treatment delays (P = .0031). Healthcare providers, brain tumor charities, and not-for-profits were ranked as the most trusted sources of information.
Conclusions:
As a result of COVID-19, brain tumor patients and caregivers have experienced significant stress and anxiety. We must continue to provide accessible high-quality care, information, and support in the age of COVID-19.
Insights
The COVID-19 pandemic caused significant stress and anxiety for brain tumor patients and caregivers globally. Accessible high-quality care and support remain crucial for this population.
Area of Science:
- Neuro-oncology
- Public Health
- Patient Advocacy
Background:
- The COVID-19 pandemic led to widespread cancellations and delays in medical procedures.
- The impact of these disruptions on brain tumor patients and their caregivers remains largely unknown.
- Understanding these effects is critical for supporting this vulnerable population.
Purpose of the Study:
- To assess the global impact of the COVID-19 pandemic on brain tumor patients and caregivers.
- To identify specific challenges faced by patients and caregivers during the pandemic.
- To inform strategies for continued support and care delivery.
Main Methods:
- An international online survey was distributed to over 120 brain tumor organizations worldwide.
- The survey targeted both pediatric and adult brain tumor patients and their caregivers.
- Data were collected from April to May 2020 and analyzed by participant role and geographic region.
Main Results:
- 1989 participants from 33 countries (1459 patients, 530 caregivers) completed the survey.
- Caregivers reported significantly higher levels of anxiety compared to patients (P ≤ .0001).
- Patients in the Americas experienced job loss and increased telehealth use; European patients faced more treatment delays. Trusted information sources included healthcare providers and patient advocacy groups.
Conclusions:
- COVID-19 has induced considerable stress and anxiety among brain tumor patients and caregivers.
- The findings underscore the need for sustained, accessible, and high-quality medical care and support.
- Continued efforts are necessary to address the unique challenges faced by this population in the post-pandemic era.
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