Brain tumor patients and COVID-19 vaccines: results of an international survey.

Background: As the COVID-19 pandemic continues to unfold, the advent of multiple approved vaccines has led to a milestone in the fight against the virus. While vaccination rates and side effects are well established in the general population, these are largely unknown in patients with brain tumors. The purpose of this study was to determine if brain tumor patients and their caregivers have received a COVID-19 vaccine, and explore their thoughts and opinions on these vaccines. Methods: An anonymous 31-question online survey available in 8 languages was conducted from June 30, 2021 to August 31, 2021. The survey was open to adult brain tumor patients over the age of 18 and included both categorical and open-ended questions. Descriptive statistics and modified thematic analyses were performed for all questions as appropriate. Results: A total of 965 unique surveys were completed from 42 countries. The vast majority of both brain tumor patients and their caregivers have been vaccinated against COVID-19 (84.5% and 89.9%, respectively). No patient reported serious adverse events from any vaccine. Less than 10% of patients decided against receiving a vaccination against COVID-19, with the most common reason being concerns over the safety of the vaccine. Patients wanted more specific information on how COVID-19 vaccines might impact their future brain tumor treatment. Conclusions: In conclusion, the majority of brain tumor patients and their caregivers have received COVID-19 vaccines with no major side effects. Patients want more information on how COVID-19 vaccines might directly impact their brain tumor and future management.

The brain tumor not-for-profit and charity experience of COVID-19: reacting and adjusting to an unprecedented global pandemic in the 21st century.

BACKGROUND: The Coronavirus Disease 2019 (COVID-19) pandemic has affected individuals as well as disease-specific brain tumor organizations. These organizations around the world exist to address unmet needs for patients and caregivers they serve. The direct impact of the pandemic on these organizations constitutes significant collateral damage. In order to better understand the effects of the COVID-19 pandemic on brain tumor organizations, the International Brain Tumour Alliance (IBTA) carried out an international survey to identify organizational changes induced by the virus and approaches adopted to address challenges. METHODS: A 37-question online survey consisting of categorical and qualitative questions was developed and circulated to 130 brain tumor organizations across the world. Seventy-seven organizations from 22 countries completed the survey (59% return rate). Descriptive statistics and content analysis were used to present the results. RESULTS: Responses fell into the following 3 categories: (1) organizational characteristics, (2) impact of COVID-19 on services, and (3) COVID-19 impact on financial and human resources within organizations. Although organizational characteristics varied, common concerns reported were activity disruption which impacted organizations' abilities to offer usual services and challenges to sustaining funding. Both financial and human resources were stressed, but integral adaptations were made by organizations to preserve resources during the pandemic. CONCLUSIONS: Although brain tumor organizations have been impacted by the COVID-19 pandemic, organizations quickly adjusted to this unprecedented global healthcare crisis. Nimble reactions and flexibility have been vital to organization sustainability. Innovative approaches are required to ensure organizations remain viable so that needs of brain tumor community at large are met.

Brain tumors and COVID-19: the patient and caregiver experience.

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.